Personal Website for Sean Brennan



Sean Brennan's Portal PageRachel LAST update (by Rachel)December 28, 2009My dear friends,As promised, here at last is the final entry of the mega-saga-blog of Rachel’s journey to near-death and back! I’m sorry if some of you have been waiting for this for too long, but it’s taken me a while to get it all together (physically and mentally) and figure out what I wanted to say. As you will see below, I did write several entries over the summer, but everything I wrote seemed to rehash the past, and I wasn’t sure that anyone would want to read about THAT again!? I really wanted to end on a very positive note, like to report that all the doctors had released me and that I was officially “cured”! Unfortunately, that STILL has not happened. But the year is ending, and I continue to receive the occasional worried email or phone call inquiring about my health. It is so sweet that many of you have continued to keep me in your thoughts all this time. It sounds corny, but it still makes me cry just thinking about the outpouring of love that I felt during my recovery. It was truly overwhelming! So, please know that I am really OK now, and that your thoughts, prayers, messages, and phone calls meant SO much to me, and continue to give me inspiration for the future. First, let me start by saying that I am doing really, really well now, and have returned to living a normal life. It has been 10 long months since the whole mess happened, and in some ways it seems like a lifetime ago. I wish I could say that I felt like it never happened, but the memory of the hospital and the intense fear that I felt is still very fresh in my mind. Although the scars on my body are fading (yay!), I still have a few sore spots in my lungs that remind me daily to be thankful for every moment. Every night as I fall asleep I give thanks that I have lived another day, and every morning when I wake up I feel so happy to see my family around me. Again, it’s corny and cliché, but life really is sweeter now. I don’t feel the restlessness that I used to, and I’m quite happy just to be alive!Here’s our Christmas photo for this year, so you can see that we are all healthy again! (You can see that Coral’s going through an “I’m not sure how to smile in front of the camera” phase, and that Ethan is still our sweet little snuggly guy!)If that’s enough for you, you can close this link now and surf away! But if you still want to read on, you will see a timeline of the important milestones that happened during my recovery. Also included are some of my memories of the whole near-death experience, the struggles of recovery, and the mental challenges of returning to a normal life. I conclude with some of the bizarre experiences (good and bad) that I had in the hospital. Please be warned that not all of what you about to read is “happiness and rainbows”. Sean’s blog, while an excellent and accurate account of events, also painted me to be a very sweet person, which is not at all how I felt during the ordeal. I was frustrated, angry, incredibly uncomfortable, and deeply frightened. My memories of the experience are therefore mostly negative. It was the most terrifying, horrible, nasty experience I’ve ever had. I don’t want to ever, ever, ever repeat what happened in February. Ever. As terrible as it was, however, I am constantly reminded that I owe my life to the doctors and nurses who got me through. I am so grateful for the excellent care that they gave me, and I could never even come close to thanking them enough for everything they did. At the same time, the unwavering and unconditional love I felt from my husband was incredible and overwhelming in and of itself (don’t ask me how I was lucky enough to catch him!). Sean was absolutely amazing through everything. He was always by my side, loving and attentive, while rapidly learning the science of medicine so that he could communicate with the doctors and safeguard my health, and at the same time still attempting to be a strong father to our two small children. His mom, Barb, was also a godsend through this whole thing, and was the glue that kept our family together. She dropped everything in her life to take care of us and our kids for over a month. Without her, Sean wouldn’t have been able to spend as much time with me in the hospital, and I probably wouldn’t have recovered as quickly as I did. It gave me such comfort to know that she was taking care of our kids and giving some comfort to Sean when he managed to straggle home. So, I hope that you can understand that it’s a wild and complicated set of emotions that I felt (and still feel) about the whole mess. Please keep that in mind as you read my entries…So, if you are sufficiently prepared, here we go! Recovery timeline (keep in mind this is mostly just a list of dates & major events – the juicy hospital stuff comes later):March 19, 2009 – Sean’s last blog entry, 5 days after I had returned from the hospital.March 20, 2009 – Barb goes back to New Mexico, after taking care of us for 5 weeks!!! Thanks SOOOOO much for everything, Barb!!! March 27, 2009 – Starting to wean off oxygen during the day. I still need it when I’m exercising, going up and down stairs, and showering though.March 31, 2009 – Discharged from physical therapy! The therapist took me for a walk around the block (with my portable oxygen tank), and then as we got back to my driveway, he said, “Well, there’s not much more that I can do for you now.” April 5, 2009 – I walked all the way to the playground (with Sean carrying my oxygen tank), which is about 2 blocks away and up a small hill. Even though I just sat on a bench and watched, the kids were SOOOO excited to have mommy there with them. Other than feeling a bit self conscious with everyone gawking at me, I really enjoyed it.April 14, 2009 – First dinner out with the family (Outback Steak House). Walking to our booth, I teared up, because it was so sweet to see my husband and our kids being happy and normal again. It was surreal to me, like I shouldn’t be seeing out of my eyes anymore. I was also paranoid the whole time that my oxygen levels would drop and that I would need to use my oxygen tank in the restaurant, but I didn’t need to! April 15, 2009 – Out to lunch with grad students at Champs. They had to come pick me up, because I was still on low-level narcotics for pain and couldn’t drive. It was so great seeing them again!April 23, 2009 – Discharged from home health care (3 weeks early)! Around this time I stopped using oxygen at night, too.May 4, 2009 – No more pain meds! It was a long process weaning myself off of oxycodone. Even though I was on the lowest dosage, I could tell it was affecting my balance and my appetite, so I tried to get off of it earlier in March, but I was having too much pain. So, I started weaning again on April 21, slowly increasing the time between doses until finally, after a 30 hour interval from May 3 to May 4, I took my last dose. Before the last dose I was still very achy and uncomfortable (kind of like I had fallen out of a truck onto hard pavement), but I figured this was just how my body feels now. When I curled up on the floor into a fetal position complaining about how I felt, Sean started laughing and told me that I was clearly having withdrawal. He said, “This is it, ok? You HAVE to get off these things!” And he was right: two days later I felt great! All my body aches and irritability were gone. Even at low dosages, narcotics are very powerful (and dangerous) things!!!May 8, 2009 – First time driving on my own again! First I met Sean for an appointment with my family doctor, who cleared me to return to work for a maximum of 4 hrs/day, with the number of days per week to be determined by how well I’m feeling. So that was great news! Then we went to Gamble Mill (a VERY nice local restaurant) for lunch and then stopped at a few shops before going to Ethan’s Mother’s Day celebration at his preschool. This was my first time back at his preschool, and it was nice because I got to say hi to all the teachers and parents. I held it together pretty well until Ethan’s teacher said, “It’s so good to see you here again!” I guess it was the way she said “here”, because I started crying. There was a time in the hospital when I thought I’d never see that place again. Needless to say, that night I was really, really tired from my 6 hours of adventures around town.May 10, 2009 – Mother’s Day Hike! Ever since Coral was 1 ?, we’ve gone on hikes for every Mother’s Day and Father’s Day; it’s a family tradition. This year, Sean asked me what I want to do for the day. Go out to eat? Go see a movie? None of these things seemed right to me, but I couldn’t remember what we used to do (a weird side-effect of the near-death experience: I have difficulty initially recalling some things that happened before I was sick). I asked Sean what is it that we always do? And then I remembered: we HIKE. I got sad, because I wasn’t sure if I could do it (and Sean intentionally did not bring it up for that reason). But when he saw how sad I was, he said, “Let’s try it!” So, we decided to go on a very flat trail that follows a river through the forest, and planned that if I got tired after only 30 feet, then we’d just stop and have a little picnic! So, we packed up the car and went. Amazingly, I was able to walk at a normal, kid-pace for ~50 minutes!!! I was so happy! To be back in nature again, after being in the confines of a hospital and my house for so long, was unbelievably refreshing and uplifting. The forest and the river were so beautiful, as was my family around me. I just tried to soak it all in. Here’s a picture that Sean took of me and the kids to prove to everyone that I was actually alive and starting to return to my former self (two months after being discharged from the hospital):May 11, 2009 – First day back at work (part time), armed with my handheld oxygen monitor! The doctors specifically told me wait until after the semester ended to return to campus so that I wouldn’t be exposed to as many people/germs. I had to stop three times on the walk from my car to my office because my oxygen levels kept dropping. My prescribed 4 hours of work was whittled away to just 1 ? hours after being stopped by EVERYONE who saw me. I later told one of my friends that I felt like the departmental mascot. Like a little lost puppy dog, everyone stopped and “awww”ed at me. People who I didn’t even think particularly liked me gave me these HUGE, absolutely genuine hugs. It was so sweet and so weird at the same time! I feel so lucky to work with such a nice group of people!I was still pretty fragile, though, and my oxygen monitor was constantly with me. I found that I had to take frequent deep breathing breaks (even just sitting at my desk!) to bring my oxygen levels back above 94%. Going back to work was hard not only because it was physically challenging, but also because it was emotionally draining. In my job, everything is done with long term vision (write a proposal to secure future funding, do research to get future results, write a paper for future publication, etc.). But it’s really hard to plan for the future and be upbeat and optimistic when you’re worried that you may not even be alive tomorrow. I tried to push those thoughts out of my head, but every day I felt like I was living on borrowed time. It was really hard, and I went through a period of feeling pretty scared and depressed. May 23, 2009 – Ethan’s robot birthday party at our house! With a house full of 20 preschoolers and their parents, it was challenging, but Ethan was so happy that it was worth it. Afterwards, I was really, really tired, though. June 3, 2009 – Stopped taking iron supplements. For the last month or so, my hair has been falling out in mass quantities. I felt like a chemo patient. Every morning, hair was all over my pillow, and when I showered, it was like small animals were falling out of my head. I was losing so much hair, my scalp showed through in some places. I started researching all the vitamins I was taking, and found that although hair loss can be a sign of anemia (which I had in the hospital), too much iron can also cause hair loss! So, I did some calculations and determined that I was taking 240 mg Fe per day, when a Centrum vitamin contains only 18 mg Fe (that’s 13X less than what I was taking!). So, I performed a little experiment on myself (which really worried Sean) where I reduced my iron intake by half, and observed that my hair loss actually slowed a little bit. So, I called my family doctor, explained what was going on, and asked the nurse to check the results of my blood work that was done in May. She checked with the doctor and called back to tell me to stop taking the iron immediately. It would have been nice if they had caught this before I was almost bald! Like I said in one of the entries below, you really have to be vigilant with your own health care! After I stopped taking the iron, my appetite went through the roof! I finally started gaining my weight back after this point. June 4, 2009 – My dad arrives from New Zealand! Sean had cancelled all his travel while I was sick, but since he’s going up for tenure this fall, it’s important that he maintains some minimum visibility at conferences. So, my dad came to stay with us for 10 days so that Sean could go to back-to-back conferences in Detroit and St. Louis. I was feeling pretty strong at this point, but it was still great having him around to help with the kids and with cooking, etc. Thanks Dad!June 25, 2009 – The oxygen generator and back-up oxygen tanks are finally removed from our house!!! Even though I was off of oxygen completely by the end of April, I wanted to hold on to the generator and tanks for a while, just in case my condition worsened. Then at the end of May, when I was feeling pretty stable, I requested that everything be picked up, only it wasn’t that easy. The rental company had to get an order from my pulmonologist to conduct a nighttime oxygen assessment, but the batteries on their oxygen meter went dead during the night, and I had to repeat it. And then they had to process the results, send them to my pulmonologist, and await his approval, and then schedule the pickup. But finally they took everything away! I was overjoyed, but Sean became strangely grumpy about the whole thing. I realized later that he was just worried about me, and this lack of oxygen in the house made him nervous.July 4, 2009 – First day back at the gym (Jazzercise 1X/week: combination of aerobics & strength training). I took it really, really easy, and was still amazed at how difficult things were. I kept having to force myself to inhale. After drinking water (and I’m sorry this is gross), I would have to swallow repeatedly to get all the mucus to clear out of my throat. My pulmonologist later explained that this was just one of the stages of recovery from pneumonia, when your lungs are basically “cleaning house”. It lasted for about 2 months, every time I exercised. July 6, 2009 – My mom comes out for her second visit. This time we’re able to actually go out and do a few fun things, like walk around the Arts Festival a little bit and go to a bunch of restaurants. Thanks Mom!August 14, 2009 – Drive to Outer Banks, NC, for a vacation with Sean’s family! When we got the bill for my hospital stay ($387k), we thought we were going to have to sell our house. But when we got the news that the insurance paid for all but $100, we got so excited that we decided to fly all of Sean’s New Mexico family out to the beach for a vacation! We all stayed in a huge house right on the beach for a week. It was awesome, and one of the best vacations we’ve ever had!Aug. 24, 2009 – CAT scan of lungs (without contrast = less radiation).Aug. 25, 2009 – First day back in the classroom! I was excited and strangely nervous. I didn’t want to mention my illness to the class, but a few of the students had been in my class last semester, so I mentioned it in the context of Penn State’s policy on H1N1: “If you get sick, I don’t want to see you. Stay home until you’re better.” Then a bit jokingly, “Really, I mean it!” After class, some of the students stuck around to chat with me, and several of them told me that they thought I looked like just I did before any of this happened. So that was nice! But the start of the semester hit me a bit harder than I was expecting. I guess I wasn’t quite prepared for the physical and emotional strain of working full time around a bunch of people constantly asking about my condition. I was really tired for the first month or so, and slept ~10 hours every night just to have enough energy to make it through the day. I was really zonked. Sept. 14, 2009 – Pulmonary function testThis is basically a lot of breathing into a machine for an hour, with and without the effects of albuterol (an inhaler). After using the inhaler, I did feel some increase in my lung capacity, which I really wasn’t expecting at this point, because with all my exercising I thought my lungs were really better now.Sept. 24, 2009 – Increase exercise to 2X/week. I really started feeling stronger after this point.Dec. 3, 2009 – Follow-up with family doctorGot the H1N1 shot (despite my age, I was still on the priority list due to my medical history). For the first time, the doctor wrote “pneumonia resolved” in my chart and did NOT request a follow-up! Dec. 7, 2009 – Follow-up with pulmonologist.He went over the results from my lung function test that I took in September and the CAT scan that I had in August. My lung function test came back really good – I even exceeded the standard for lung capacity for average people my age! My CAT scan images looked almost entirely clear. There was just a very slight haziness in one section of the lung, which he was reluctant to even call scarring. At that point I started to become hopeful that he was going to completely release me for good, but then he pointed out several “nodules” in my lungs – small little round areas of scaring. Two are obviously where the chest tubes hit my lungs in my lower back, but 2 or 3 others are scattered, mostly in the front of the lungs. He said that for someone like me with no other risk factors, these nodules will probably remain innocuous. But, in some rare cases they can become malignant, so he wants to scan them once a year for the next two years. If they go away or remain the same, then he will release me. If not…. then it’s a whole new battle. Dec. 21, 2009 – Sean is diagnosed with strep throat. Although I was only feeling a bit under the weather (and was not even at the appointment!) the doctor prescribed antibiotics for me, too, “just in case”. I was irritated that they didn’t even want to examine me, but Sean insisted that I take them, so I did. As he put it, we continuously put all of our livestock in this country on antibiotics, so what’s the harm in putting someone with my “history” on them as a preventative measure for just a week? It still bugs me, but I guess I see his point. I’d much rather be cautious than possibly end up back where I was (or worse!), but I just don’t like being treated like I’m so fragile. This is humorous to some of you, I know. (Sean’s comment: They worked and she felt much better after about 3 days.)Dec. 25, 2009 – First Christmas in PA. Early on, the doctors had said that it would be best for me not to fly at all for the rest of the year, just to avoid picking up germs in airplanes, etc. (Apparently my immune system will not be fully recovered for 9 – 12 months after the event.) So, to play it safe, we decided to stay in PA for Christmas, rather than going home to New Mexico like we’ve done every year since 1997! At first, we were all happy about getting to stay home, especially Coral who said, “Maybe Santa never visits us because we’re never home for Christmas!” Ouch! So, Sean and I were happily planning a great Christmas with just us and the kiddos, but then as it got closer we both got a little depressed. We miss our family and the southwest so much! But the kid’s happiness on Christmas morning was unbelievable, so that made it all worth it.Dec. 29, 2009 – Finish the blog!!! ….Here’s some older entries that I wrote over the summer:April 23, 2009I got released from home health care today, three weeks ahead of schedule! Now it’s just periodic doctors’ visits until I’m really better. When will that be? Well, I finally got in to see the pulmonologist last week, and he showed us my most recent chest x-rays on the computer (everything’s digitized here, it’s awesome!). We could see that there’s still some fluid at the bottom of my lungs, and my left-lung still looks pretty cloudy (i.e., full of inflammation). Sean was anxious to know the time-line for my recovery, but the doctor said that it’s still too early to say for sure. Typically with cases as bad as mine, it’s at least 6 – 12 months for full recovery. But he seemed very happy with my progress so far, and rattled off this long list of scary-sounding things that he said I’m very lucky I didn’t have happen to me! He doesn’t even want to check my lung capacity or run any more tests until I’m more fully recovered. At that time, he’ll do a full evaluation, and even check if I have any baseline asthma or allergies. These are things that I never thought I had growing up in the desert of New Mexico. But my mom reminded me that when I was a baby and we lived on the coast of southern California, my breathing always sounded congested and raspy. When we moved to New Mexico, it all cleared up. But ever since we’ve lived in Pennsylvania (almost 6 years now), I feel like I’ve been almost continuously sick with some kind of upper respiratory thing. I thought it was just one of the joys of having young kids and a stressful job, but now I’m wondering if there’s more to it.…Which brings me to my first comment on extraordinary things that might shed some light on my whole illness (and this is something I think everyone should be careful of in their own lives)…When I was in the hospital, everyone kept asking me where I got it. How did I get sick? Was I sick a long time before I went to the hospital? “I don’t know. I don’t know. No.” I always said. I thought I had only had a bad cold for a couple weeks leading up to the now infamous February 14. But after I got home and had some time to think about things, I realized I had actually been sick for quite some time. I remember being sick back in December. In fact, I remember coughing so hard during my class’ final presentations, that one of the students jokingly said, “You’re going to lose a lung!” Haha. But the semester was almost over, and I knew I’d be able to rest up over Christmas vacation. But I didn’t feel better. In fact, I went to the doctor during our visit to New Mexico, and I felt so bad that I laid down in the waiting room (something I never do). When the doctor finally got to me, she looked at me, felt my neck, listened to my lungs, and said everything seemed fine, it was probably just a virus. Then she stepped back and asked, “Do you think you need antibiotics?”What a strange question. “I wouldn’t be here if I didn’t think I need something. I feel terrible.” And it’s true, I never go to the doctor unless I’m really sick.But she proceeded to talk me out of it, and sent me home with nothing but an order to get lots of rest and drink plenty of fluids. My fever did finally subside, and I started feeling a little better, but my cough never quite went away, and it got worse when we got back to Pennsylvania in January. By the beginning of February my fever was back (off and on), and my cough was almost irritatingly continuous. Then, on Friday, February 13 (the day before I was admitted to the hospital with full pneumonia), I had to stay home with Ethan because his preschool was closed. We were running errands around town, and I had some extra time, so I made an appointment to see the doctor, because I wasn’t kicking this cough. Once again, he looked at me, felt my neck, listened to my lungs, and said everything seemed fine, it was probably just a virus. I guess he could tell I looked irritated, because he went ahead and wrote a prescription for antibiotics, but told me not to fill it unless I felt worse over the weekend. Haha.So, I left, and took Ethan to do some last minute shopping for Sean’s birthday (which was on the infamous 14th). After we got home, I put Ethan down for his nap, and I laid down on the couch (again, something I hardly ever do). When Ethan came downstairs two hours later, I felt so bad I didn’t want to move. I asked him to just play quietly so Mommy could rest a little bit more. A few hours passed in a haze, and when Sean got home I asked him to fill the prescription. “Now?” he asked, somewhat miffed since he had just walked in the door. “Yes, please. I feel terrible.”When he got back home the second time, I took one pill and went to bed without eating dinner. I tossed and turned, and started throwing up a few hours later. My fever climbed to 105 oF, despite taking ibuprofen. I could feel myself getting dangerously dehydrated (something I was hospitalized for once as an undergrad back in New Mexico after food poisoning), so I kept trying to drink water and eat a few crackers. But my mouth was so dry, I could barely swallow.When morning finally came, Sean and the kids let me sleep in (I could tell they were doing “secret” Valentine’s preparations). But when Sean came to check on me an hour or so later, he knew something was wrong. He gave me two more ibuprofen, and said if my fever didn’t come down in 30 minutes, we were going to the hospital. After only 20 minutes, I stumbled weakly out of bed and called him from the top of the stairs. “Let’s go now,” my voice creaked. I took off my wedding ring and put it on the dresser. I knew something was really wrong and that I was going to be admitted. I was so weak and dizzy, Sean had to help me down the stairs and put on my shoes.Sean started bundling up the kids to take them with us. He knew things were bad, but he didn’t realize how bad. “No,” I said. “Take them across the street to Mike’s.” Half an hour later we were at the hospital and you already know the rest.So, the point of all this is, after relaying this chain of events to the doctors, they now think I may have had walking pneumonia since December. But since nobody caught it and they told me it was just a virus, I continued to push forward, even though I felt so bad. Then, when I caught the strep (we still don’t know from where – probably from one of the kids), it just went nuts in my already weakened body.The moral of the story is: if you feel really bad, demand that the doctors look further. I will never be complacent in a doctor’s office again! (I also want to note that I have since read that pneumonia is often very difficult to diagnose, so I really can’t “blame” anyone for not finding it earlier. In fact, when I was first admitted to our local hospital, the doctor ordered some routine blood work, and when he saw that my white blood cell count was almost zero, he started hypothesizing that maybe I had leukemia or AIDS. It wasn’t until three hours later when my oxygen levels started dropping that they finally decided to do a chest X-ray. When it came back, and they saw that my lungs were almost completely filled with pneumonia, the doctors and nurses went into hyper-speed. They pushed my bed into the brightly lit ambulance prep-room and one of the doctors quickly said, “We’re going to give you some medicine to fall asleep so that we can put you on a ventilator to help you breathe, ok?” But it wasn’t really a question, because right as he was asking it, the anesthesiologist was injecting the paralysis medicine into my IV. It was crazy how suddenly everyone realized I was really ill, and they just couldn’t move fast enough, when an hour earlier it seemed like they had all the time in the world to figure things out.) The point of this whole story is that you have to insist on care if you know something is not right with your body. For months I had trusted the doctors’ assessments that I just had a virus, when I should have continued to complain that I really didn’t feel right. The difficult thing I realized though, is that feeling really sick doesn’t feel that much different from feeling almost dead!The doctor that admitted me here in State College and transferred me to Geisinger actually called me a few weeks ago to follow-up and see what happened with me. When I told him that I had pneumonia with Strep A septic shock, he was shocked. “Are you all in one piece?” he asked.What a strange question. “Uh, yeah…” I said. “What do you mean?”“You are so lucky! Most people that get Strep A like that end up getting something amputated.” Apparently Strep A releases all these toxic proteins that rapidly destroy living tissue. “It’s a flesh eating bacteria,” he told me. “It replicates every 20 minutes.”When I told him that they found the bacteria in my blood stream but it was dead, and that it was found with residual antibiotics from the night before, he said, “You are so lucky. That one pill probably saved you.”Wow. It’s hard to believe that things got so bad so quickly, and that they could have been much, much worse. I’ve been trying to piece the timeline together since I got home, since I don’t have any memory of things when they were really bad. It turns out it was only 16 hours from the time I checked into the hospital on February 14, to the time the resident doctor at Geisinger called Sean to tell him to come say good-bye to me. I know this because Vonage nicely left a copy of that doctor’s voicemail in my email account, so I have the time stamp. What a nice thing to come home to! When I heard the message, I felt sick to my stomach. I listened to it again and again, trying to gauge from the doctor’s voice what he was thinking. He was all so professional. Like a vet calling to tell you that your pet it ready to be picked up. I guess that is how doctors learn to cope with all the emotional side of patients and family on the edge….…But here I am, writing this blog. For a normally intensely private person, this is a big deal. But after everything I’ve been through, it seems like a relief to be able to share it. Even if it only helps one person to seek (and pursue!) medical attention when they need it, it will be worth it.A lot of people have asked to hear my new “take on life”, my new “perspective”, after everything that has happened. In other words, they want to hear what the near-death experience left me with. What is my new philosophy on life? Well, I don’t know that I have that yet. It’s not like I remember almost dying. I was in a medically-induced coma. When I woke up, I felt like I had only been asleep for a few days. The first thing I remember in the darkness was Sean screaming my name, and me seeing his worried face for a fraction of a second in front of my eyes. But then everything quickly went black again. Then I remember voices. Apparently my brain perked up when Sean was talking, because I have memories of certain conversations he had with different nurses when I was starting to come out of it. I remember him holding my hand. I remember trying to look around my room at night and seeing all these indistinct shapes of equipment all around me. And then when I was finally really awake, I remember being mentally all there, just tired. I hated the tubes in my mouth. I hated the gunk they put in my eyes that made everything blurry. I felt so hungry. Really really hungry. I was worried about the kids. I was worried about Sean. I was worried about Barb. I was worried about my students. I wasn’t really worried about myself until Sean read part of the blog to me and told me that I almost died. He waited to do this until after I was transferred out of the ICU, when he thought my condition was relatively safe. But then, a few days later, when I started relapsing, I finally started worrying about myself. When they put the second chest-tube in my right lung, and I felt the LITERS of warm fluid gush from my body, I got worried. After that, when they sat me up and I still couldn’t breathe, and they bagged my face, I got scared. When they rushed me back to the ICU and told me that what they were doing wasn’t working and that they were going to put me under again, I got really, incredibly scared. I thought this might be it. I might never wake up again. Tears filled my eyes and I asked if they could take the bag off my face so I could talk to Sean. They reluctantly agreed, and told me it would only be for a moment. I reached for his hand and told him that I loved him. Then I looked hard at the two doctors bending over me and thanked them again and again. I felt like they were holding my life in their hands, and everyone there seemed to know it, too. They tried to smile reassuringly at me, but the worry in their eyes was unmistakable. After only a few seconds, they bagged me again, and I heard a voice behind me asking for confirmation from the doctors of the volume of anesthesia before they injected it into my IV. I saw Sean leave the room. And then everything went black.When I woke up this time, I could tell only a short amount of time had passed. For one thing, I was in the same room, and I could still see (so I hadn’t been under long enough for them to put that junk in my eyes). Another comforting thing was that I had the same nurse that was there when they put me under, and she was still in my room busily doing things around me. I was relieved when I looked up at the clock and saw that it was only 2am (they had put me under at ~8pm). I started to become a little nervous when I realized that the tubes were in my mouth again. I was still relatively calm from the anesthesia, but that quickly wore off. By the morning, I was feeling panicky. I couldn’t keep my breathing steady. I couldn’t feel the ventilator. I didn’t know when to breathe in and out. I felt like I was going to hyperventilate. I asked for something to help me calm down. It was hard for me to admit that I was losing it, but I was. I felt like I did the first time I went snorkeling: that panicked feeling that you’re going to drown and the irresistible urge to breathe in faster despite all the water around your face. My anxiety was overwhelming. So, for a few days, I requested sedatives. This was a hard thing for me to do, but everyone seemed to think that it was perfectly fine to “take the edge off”. Anything to help me rest and recover seemed acceptable to everyone. It wasn’t until 4 or 5 days later when they started talking about taking the tubes out of my mouth again, that I finally started to relax. …More bizarre experiences in the hospital…One of the first things I remember after waking up in the CICU, was a “treat” that one of the nurses gave me. It was a simple, small green sponge on a stick that they use to swab out patients’ mouths. Before swabbing out my mouth one day, he said, “This one’s to clean…”, and then wiped out mouth as usual. But moments later he picked up another sponge that he had soaked it in ice water, and said, “This one is to enjoy.” He put it in my mouth, and I was in heaven! Whoever thought ice water would taste so good! I signed for “more! more!”, but he could only give me a little so that I wouldn’t aspirate water into my lungs. Later, when I was sent to the ICU, I asked for “green ice” again, but the nurses were reluctant to give it to me. When the doctor said it was ok, they marked in my chart that I liked it, and from then on, I always had little cups of “green ice” near my bed. One of the perks of almost dying, I guess. Another really nice thing that stands out in my mind is the box of donuts that one of the ICU nurses brought to me when I was on an increased “calorie count” toward the end of my stay. After learning that donuts are my favorite food, she used her break to sneak out and buy them on her own – it was so sweet and very unexpected. One component of the recovery process that not many people got to witness, though, was my progression through different emotions. After getting over the initial shock (no pun intended) of what had happened to me, and being amazed at all the tubes sticking out of my body, I quickly proceeded to become annoyed and then actually angry. I was so pissed off at everything. I was mad that the doctors never caught what was happening until it was too late. I was mad when some guy in the CICU injected some type medicine into me, which made my stomach burn like fire, only I couldn’t tell anyone because I had all these tubes in my mouth. Luckily, the main nurse came in right at that time, and quickly figured out that something was wrong and how to fix it. I remember the panic in the first nurse’s voice when he said, “Oh man!” as he scrambled to figure out what had happened. Then there was the time in the ICU right after they had removed the catheter, and I was having a lot of trouble peeing. I tried and tried, but I just couldn’t do it. At the same time, they were giving me medicine to force the excess fluids out of body (remember the 37 liters they injected into my veins when I was admitted?), while still giving me a constant IV drip. Despite all these facts, my attending doctor in the ICU didn’t want to cath me, and left orders in my chart for none of the nurses to either. She actually said to me, “People can die of having a catheter in for too long. Do you want to die?” Nice. She actually bargained with me, that if I peed, she wouldn’t order as many chest X-rays. What??? So there I was, in total agony, with my knees curled up to my chest and my whole body shaking because my bladder feels like it’s going to explode and I can’t pee. Finally, one of the nurses finally relents and straight caths me, despite the doctor’s orders. The nurse collected over a liter of urine out of my bladder at that time. Crazy! Meanwhile, this same catheter-obsessed doctor had not ordered a chest x-ray for that day, and the nurses were so busy that they were not listening to my lungs very often, despite my coughing throughout the night. And that’s when, fortunately, the infectious disease doctor came in to check on me. With just one look, he said, “You don’t look so good.” He took out his stethoscope, listened to my lungs for just a moment, then quickly turned and shouted for the nurse. She rushed into the room, he shoved his stethoscope at her, and angrily said, “What do you hear?” She bent over to listen to my lungs, and her face went pale. Immediately she rushed out of the room, and then moments later a whole group of doctors and nurses came in, laid me down, and cut me open to insert another chest tube. Right there without any other preparation. When the chest tube went in, I coughed, and I felt warm fluid gush from my body. It sprayed all over the doctor and all over the floor. I already described what happened after that (above), but the ironic thing is, when they readmitted me to the ICU, they reinserted the catheter. Hallucinations….There was a day or so when whatever pain medication they were giving me was way too strong. Since I had almost had multiple organ failure at the beginning of the illness, they didn’t want to give me over-the-counter pain medication like ibuprofen that might damage my liver further. So the next alternative is: narcotics! One night I vividly remember that the nurses outside my room were trying to catch a cat. It got away from them, and it crept into my room and started circling the chair where Sean was sleeping. Since he’s allergic to cats I tried to wake him up, but with the ventilator in my mouth, I couldn’t speak. So I started banging on the side rail of my bed. Eventually he stirred, but the banging had already scared away the cat. He looked up at me and could tell I was frightened. “What is it?” he asked. I tried to use sign language to spell C-A-T, but my hands were so swollen that he couldn’t make out the letters. So, he had me point to the letter chart. I slowly spelled out C-A-T, but he thought I was worried about the CAT scan, and proceeded to explain the results to me again. No, no, no, I shook my head. C-A-T. “What?” he said. I nodded my head up and down and pointed to the floor. “What???” he said again. I was getting really frustrated by this point. But I kept at it, and somehow I managed to convey to him that there was a cat in the room, but he clearly didn’t believe me. When the nurse walked in a few minutes later, I nudged at him to tell her. He just looked at me like I was crazy, and barely shook his head “no” at me, so she couldn’t see. After the nurse was done checking me, she asked if she could do anything else to help. I nodded, and nudged at Sean again. Reluctantly he told the nurse how I thought I had seen a cat in the room. The nurse obviously didn’t believe this either, and very calmly proceeded to ask me if I was missing a cat at home? Did I mean CAT scan? No, I shook my head, and gave up. I realized that they both thought it was all in my head, and suddenly I had flashbacks to how people treated my grandmother when she was getting into the worst of her hallucinations with Parkinson’s disease. I suddenly knew exactly how she felt. It seemed SO real, and it felt like everyone thought I was crazy.Later that night I also hallucinated that the mirror in my room was a two-way mirror, and that there were med students on the other side observing me (after all, it was a teaching hospital!). I also hallucinated that one of my grad students came to visit me to ask for help on her Masters thesis (which she actually was working on at the time). Although the dosage of narcotics was lowered the next day and I stopped having hallucinations, I still wasn’t convinced that the “dreams” I had had weren’t real until they transferred me out of the room several days later and I could see that there was only a patient room adjacent to mine – no “hidden” classroom. And it wasn’t until I got an email from my grad student that I finally became convinced that she hadn’t visited me that night.….Moving the whale…Shortly after the hallucination experience, the physical therapy nurses in the hospital tried to get me to stand up so they could transfer me to a chair (this is one of the things they do to start encouraging you to regain mobility). At that time, I was too weak to even sit up in the bed, so two of them came in and slowly lifted up my back. But even the muscles in my neck were weak, so my head kind of flopped forward as they sat me up. It was then that I saw my belly for the first time since entering the hospital. I swear, I looked like I was 8 months pregnant. “I’m so fat!” I remember telling the nurses, and they laughed. Then, they tried to stand me up. Of course, my legs were like jello, and my legs were so swollen that I couldn’t even flex my ankles enough to stand normally. I don’t think the nurses were prepared for how heavy and how weak I was, because they lost their grip and I sloughed back into the bed. They had to try several times, but finally with some coordination they managed to stand me up and then sit me down in a chair immediately adjacent to my bed. The next day, there were no physical therapy nurses available, but the regular nurses were very motivated and helpful and still wanted to get me back into the chair again. So they got this huge lifting machine to help. It’s like a forklift with a canvas harness attached to it. First, they had to get the harness on my body, which was not easy, again because I was so fat and weak. It took 6 of them, 3 on each side, to maneuver my hugeness into the harness. Then they attached the harness to the machine and started lifting me into the air. But I don’t know if they had had much experience operating the thing, because I went up really really high, and almost touched the ceiling. It was like a circus, with the 6 nurses watching me from below, some of them holding my various tubes and tanks, others moving furniture, others guiding my body into the chair. I swear, I felt like a beached whale being rescued by the coast guard. It was hilarious, but I couldn’t laugh with all the tubes in my mouth. Once they finally got me seated, removed the machine, and all the nurses left, I just sat there astounded at the whole process. My main nurse came back in, looked at me, and asked, “Are you ok? You have a really strange look on your face.” Of course, I couldn’t explain to her how I felt, but she finally guessed. “You’re like, ‘what the *@$! is going on’, right?” Yeah, that about sums it up.….I think that about covers most of the bizarre experiences that weren’t mentioned in Sean’s original blog. Hopefully you will benefit from this retelling in some way, whether it is being careful and vigilant with your own health, or helping others to be. Again, I can’t thank all of you enough who have given your support this year. It has meant so much to all of us, and I only hope that I can repay you somehow in the future. In closing, I feel like I really need to thank some people by name, so that they know how much their help meant to us. There are, of course, many many others who helped as well, but these are the few that stand out in my mind as being particularly extraordinary in their efforts:Dr. Patrick Walsh & Dr. Joseph Smith – these guys literally saved my life that first week in the hospital. I would not be alive today if it wasn’t for their excellent care.Dr. Mary Francis Koester & Dr. Svetolik Kjurkovic – the critical care physicans that helped me through my second stay in the ICU. Again, amazing doctors!Nurse Joe Costa – the first person I saw when I came out of the coma in the CICU. A former special ops guy who attacks germs now, not terrorists! He was really top-notch.Nurses Amy Gearhart & Amy Shurock – the AICU nurses who helped me tremendously during recovery. They actually made my stay “enjoyable”, if it’s possible to say that about a hospital! Dr. John VanKirk & Dr. Michael Flanagan – my pulmonologist and our family doctor, respectively, who have been so careful and thorough with caring for me after being discharged from the hospital. They are both fantastic doctors!Mike & Becky Wittrig – our wonderful neighbors who took care of Coral & Ethan before Barb arrived from New Mexico. They also provided many, many meals and support throughout the whole process, and organized the neighborhood to help with the same. We are so lucky to have them as friends!!!….I hope I never have to write a blog like this again. But thanks very much for taking the time to read it, and again, for all your support. Thank goodness we made it through 2009. Here’s to a HEALTHY and happy 2010!!! Love,Rachel P.S. If you want more proof of my full recovery, check out this brief news article that includes pictures of me and my students in action this past semester: ’s pretty cool, and definitely not as traumatic! Old Rachel updates (by Sean)10am, Mar 19Hi everyone,Sorry it has been so long since a blog update, and I feel a bit guilty knowing many of you check this daily. The entries will be in longer intervals now that Rachel is home and needs our care. Also, I’m teaching again, Rachel’s mom is back in NM, and my mom is leaving tomorrow, so I’m doing all the pick-up/drop-offs, baths, etc. It’s pretty much non-stop from when I get home at night to when everyone goes down for bed.Rachel is doing very well. Yesterday she went on a walk outside and made it to the TWO houses down! The physical therapist says she doesn’t need her walker anymore based on how well she did without it, so that’s a HUGE step toward recovery (no pun intended). She is getting stronger every day, but she is still tires very easily and needs the oxygen turned up for physical activity. She is also still a bit unsteady when walking, so the therapist taught her some exercises to try to get her balance back. The doctors don’t really know how long Rachel will need oxygen, but they estimate it will be June, July, or August before we can stop it. She is doing her breathing exercises religiously, and lately says that it feels like her lower lungs are opening up finally. There’s quite a bit of “popping” and “twinges”, sometimes painful, but the doctors said that this would be normal as different passages unclog or drain out.The kids are VERY happy to have mommy around again, and have learned to keep clear of her breathing tubes and not jump on her. Coral is obsessed with mommy’s breathing inspirometer, a device that measures intake of air and reports each breath in liters. The goal is to breathe in as hard as possible, and thereby exercise the lungs. There’s a little bar on the side that sets a “goal”, and when mommy hit the “1 liter” goal for the first time yesterday night (she was at 500 mL a week ago), Coral was very happy! Of course, Coral immediately moved the bar up to 1500 mL! (wonder where she gets her drive from?) Ethan loves to run on/off mommy’s nebulizer and fan, and also loves playing again with mommy’s hair. He has the sniffles lately, so we are being very firm with him washing hands.Mom has been the greatest, and is especially pampering us lately as she gets ready to go tomorrow morning. She’s been a tremendous help and definitely the rock of the family the past month, but at the same time I can see that this has been hard on her, especially since she thought the trip would only be a week or so when she first came out. I’m sure she is looking forward to seeing all her friends back home, and finally get to a new set of clothes that she hasn’t worn a dozen times in the last month. (she says she plans to burn her wardrobe upon return!)As for me, I’m doing better. Being in front of the class is definitely helping, and it reminds me of how much I really missed my “kids”. Yesterday was a big day since it was the first day that I did the whole routine of lecture prep, etc that takes up so much time outside of the class. And last night, I came home and mom/Rachel had made a birthday cake and wrapped my presents from the missed, horrible day on Valentines when this all started. The presents were SO sweet, and reminded me of how Rachel pampered me so much before all this happened. I can only hope that I can do the same for her over this next year.The schedule so far is MWF are teaching days for me, so Rachel will be on her own then. Tuesdays and Thursdays I will be at home at least one of those days, if only so I can get some of the house stuff done such as shopping etc. At this point, I’m starting to set up help for around the house, and thanks to everyone who has been sending suggestions for house cleaners, lawn mowers, etc. If I need some help in the next few weeks, I may be reaching out to some of you. I’m normally VERY reluctant to accept help – a pretty normal attitude for someone from the southwest – but I promised mom that I’d do my best to keep from getting buried. I’ll try to provide weekly updates, but they may quickly turn into monthly updates since Rachel is becoming stable. And Rachel promises to provide the last blog entry! Thank you everyone for your support and care,Sean9pm, Mar 13Hi everyone,I have the most wonderful news! They are releasing Rachel from the hospital!! And not to rehab, but to HOME! She’s free at last, free at last, thank god almighty, she’s free at last!OK, the back story: We visited Rachel today, and as a surprise, we brought the kids along. At least, it was a surprise until Rachel asked to talk to Coral this morning before we left, and in 10 seconds figured out what we were doing (Coral was strong, but Rachel is THAT good).We got there at about noon, and at the start of our visit, Rachel told us the same story as before: that she may not be released to rehab until Monday. But that, as of this morning, the doctors weren’t sure what the rehab facility could do for her. Apparently, the normal rehab patient works on developing a level of proficiency in day-to-day tasks that allow a return to normal life: brushing teeth, combing hair, walking, etc. The thing is, Rachel has been doing all that at the hospital. Her only problem is that she can’t breathe very well without oxygen! And the rehab facility can’t change this fact much other than exercise. Since this exercise can be done at home, the only thing keeping her in hospital care is 1) someone needs to be with her for two or three days after release from the main hospital, and 2) she has to be able to do stairs.Hearing this, my mom mentioned that her return flight could be scheduled at the end of the week, allowing me and her to provide the round-the-clock help Rachel might need. And shortly thereafter, the occupational therapist came by, watched Rachel walk down the hall – she was amazingly solid this time – and then led her to the stairwell. She was slow and careful, but she climbed a flight of stairs with no problem at all. The therapist said right after this new level of performance that she could go home, that all her rehab could be done there, and that we didn’t even need to have the bed downstairs – it would be good for her to climb up/down to the 2nd floor bedroom anyway!So she’s coming home!!To celebrate, we took the kids tonight to get pizza let each pick out a rental movie. Hopefully we’ll be decorating the house tomorrow for her return! The only hold-ups are that we have to have oxygen systems installed upstairs and downstairs, and we have to have an official discharge from the hospital. We know everyone is anxious to see her and to talk to her, but she will need all the rest she can get once she gets back. Although she will be home, she is still very fragile and won’t be bouncing around the house for quite a while. I’m also sure she will want to limit contact with folks for a few days while she heals from all the TLC the hospital gave to her! (they did a great job, but her skin is a bit beaten up)Thanks for your thoughts and prayers for her speedy recovery, and we are in the home stretch! (no pun intended)-Sean7pm, Mar 11Hi everyone, We had a great visit with Rachel today, and she surprised us by walking completely to the end of the hall and back to her room! She didn’t even seem winded! They will be stopping her antibiotics tonight or tomorrow, then need to observe her for one day afterwards. If she checks out OK, they will take out her central line, at which point she can leave for rehab! So again, they say this move to rehab (or at least “normal” care) MIGHT be as soon as Friday, but most likely Monday or thereafter. Rachel is also in good spirits, and loved the recent messages I read to her today that everyone is sending to me.Mom did the driving both to and from the hospital, which was a huge relief. Even just having someone to talk to was a welcome change, and we talked quite a bit about all that had happened the past few weeks and how abruptly everything changed overnight… It seems years ago that all this started. Even the sky was blue for the whole drive home, and mom said the 50 mph winds reminded her so much of New Mexico!When we arrived back at the house, Coral’s piano teacher Bekah showed up minutes later and had a good lesson with Coral. I then took the kids to the playground and chased them around for a while, until the cold drove us back inside to warm up again. The kids are eating dinner now, and our hope is to get the kids down for bed a bit early tonight as they still aren’t quite adjusted to daylight savings. This reminds me: thanks again to all the neighbors who are still feeding us so well! Sorry that there’s not much more to tell, but today has been wonderfully normal!- Sean11pm, Mar 10Great news! The doctors are talking today about rehab!! This is the first time they have even hinted at LEAVING THE HOSPITAL! They haven’t told us anything firm, but they are saying that she might be able to get out of the care facility in the next week, and then would spend one to two more weeks at the rehab facility at Pleasant Gap (~15 miles from our house!). We’re so excited!!The CAT scan today looked good, at least for someone whose lungs were completely devastated not too long ago: no fluid, no collapsed lung portions, no air trapped between the lung and chest wall, and no obvious secondary infection. Of course, the residues from the pneumonia are still there, and will likely be there for several months. But the doctor today hinted that they think that all the microbes are dead, and that they are just being very cautious now about keeping Rachel on antibiotics. And of course, they are worried about moving her because she doesn’t last very long without supplemental oxygen. They did mention that this will probably be the last CAT scan, unless things get worse again. The docs at this point don’t want to give her any further high-doses of radiation, as they let Rachel know today that each CAT scan has roughly 1000 times the radiation of one chest x-ray. Glad they waited to tell her after she was better, especially since she was reluctant to let them keep doing chest x-rays daily. I can’t imagine the fight they would have had trying to get a CAT scan if Rachel knew the dosage ratios! I joked that, since she had four CAT scans so far (at least), she has the next 12 years of daily x-rays covered! Rachel was also happy to see her mom today, so happy she did a little performance for us. Today’s show featured my wonderful ballet dancer stepping onto the stage (out of her room) for the first time and leaping through the air (plodding in a walker) in front of a packed house (she made it to two other rooms down the hall!) She said that her feet felt like golden butterflies (logs made out of lead) and that they could have fluttered all night (she needed to sit down quickly)! We were so proud of her that we filled her dressing room (her hospital chair) with wonderful presents worthy of such a grand performance (more high-protein dessert drinks that she had to drink… today’s special was orange sherbet mixed with milk protein powder, yum!). Rachel’s mom Alice is staying at the hospice bed that I’ve been occupying the past few weeks, and before leaving her, I did my best to get her oriented to the strange hospital layout. At least, good enough that WHEN my mother-in-law gets lost, she won’t say that it was intentional! I’ll be doing the back-forth drive for a while, probably until we get Rachel moved closer. Once we have a firm date for Rachel’s move to the rehab facility, we’ll probably let mom return to New Mexico since the folks there miss her too; she’s apparently mommy-the-world-saver for many more people than just her kids! We’ll also post an address for the rehab to those of you who want to send something. We are moving hospital beds every few days now, so everything sent to us now is one more thing for the nurses to carry.Tomorrow we’re planning on taking the kids in to see mommy for the second time since this all started. Hopefully the experience won’t send her back to the ICU (like last time). Before leaving today I warned Rachel to get lots of sleep and to stay on her pain meds. Tonight I also told my 3-year-old about the upcoming visit, and though he loves his mommy more than anything, I’m still not sure he understands. Our conversation went like this: “Ethan, tomorrow morning we are going to drive early to go see mommy at the hospital.”“Will there be ice on the road?”“No, it is cold outside, but it’s not that cold. There won’t be any ice on the road.”“Will there be ice cream on the road?” “No, that would make it very slippery, and then sticky…”“Then I don’t want to go…”“That’s too bad, since there may be ice cream at the hospital. We’ll have to eat it without you…”“How do they get ice cream at the HOSPITAL?!” “They have people bring it, or they have machines that make it. The hospital has LOTS of machines!”“They have MACHINES that make ICE CREAM!?” (I think this is the first time he realized that ice cream can be made on demand)“They might.”“Somebody should turn them off. I want to turn them off tomorrow so that nobody gets the ice cream!” (he’s saying this because he knows ice cream is a treat that you only get AFTER you eat healthy food first, and you go to a hospital to get healthy)“But they might be making their ice cream tonight, so that it will be ready for tomorrow.”“Then we should go tonight!”“How about we go tomorrow, and after we see mommy, we can check on the ice cream. Does that sound good?”“OK! We should go early though. Can you carry me if I’m sleepy?”“Yes, I’ll carry you… goodnight Ethan!”As I’m sure you can tell by the last few blogs, we are all so happy about Rachel’s improvement. I talked to her today, and our plan is to keep this blog going until Rachel is out of the hospital and into rehab. There are so many of you who have written, called, prayed, cooked, shoveled, babysat, and of course cried alongside us, that we can only say how amazed we are at the outpouring of hope and kindness. We look forward to catching up with you all soon. (On that note, after reading all the messages sent to me for her, Rachel asked again today if I’m keeping them archived so that she can follow up one-by-one when she’s better. I told her yes, but that everyone wants her to get better first!)We love you all and thank you so much!- Sean10pm, Mar 9Hi everyone,We still have no news from the CAT scan that was supposed to be today but ended up being just moments ago. The doctors, sensing my frustration, told me that we’d have to wait until tonight to do the scan since outpatient services have priority during the day. I just talked to Rachel moments ago, and she just came back from CAT machine, and was a bit bummed since she couldn’t hold her breath as big as she wanted, since she wanted her lungs to look as “big” as possible on the machine! I told her the last thing she needs is for the doctors to see these wonderfully inflated lungs, think that this was “normal” Rachel, and then send her immediately home!She’s also being fed constantly, trying to get weight back on her. When I walked in, she had three desserts and what looked like two full meals piled up in front of her. Poor thing! The irony is that she loves to eat salad, but the nutritionist said that this isn’t exactly the best thing to eat if you are trying to put on weight.The fact that the doctors aren’t pressing so much for the CAT scan tells me they aren’t that worried about fluid build-up. And Rachel’s outward appearance is also a bit better today… I got to see her walk to the bathroom and she did really well! Of course, she’s not going to try out for the Olympics or anything, but if you chose a small nursing home, Rachel could probably hold her own!Today was a rough one for me, with 7 hours on the road. I’m up to round-trip #16 to Danville, and at 100+ miles one way, I’m at least up to 3200 miles the past three weeks! We had our car serviced the week before this happened, and the “needs service” light just came on again today. Even my iTunes list is really seeming old now. I picked up Rachel’s mom at the Altoona airport, which turned out to be about 70 miles in the opposite direction from the hospital! We though the airport would actually be in Altoona (45 minutes away), but it should have been called the “halfway to DC” airport since you drive WAY past Altoona proper to get to it. I planned to be there about 30 minutes early just in case the flight came in early. Good thing, since I just barely arrived as she picked up her luggage. She had a good flight, and spent the long car ride back catching up with this blog, which she hadn’t seen until today. There were quite a few gasps and hands over mouth expressions during that hour and a half. We’ll be driving back to Danville tomorrow (trip 17) so she can see Rachel for the first time since this all began.Mom and the kids are doing OK. Mom’s struggling to keep her sanity watching the same kids shows over and over and over. If anyone is into “Barbie’s 12 Dancing Princesses” or “Space Buds”, please inquire at the E-mail below! So much for all those Baby Einstein videos we pushed on them earlier. But seriously, they are doing fine and hanging in there as well as can be expected. Rachel asked to talk to mom tonight and thanked her profusely, and how her help with the kids lets her get better and will let her visit with her mom later this week. I’m looking forward to tomorrow (not the driving) because I’m hoping the doctors will show us an “end of the tunnel” view. Rachel is really starting to ask about long-term planning at this point… when we can set up a bedroom on the first floor of the house, long-term rehab, or even when my mom might be able to get her life back. Of course, we’ll let you all know.Thanks so much to those of you who recently found this blog and have been E-mailing us… we are sorry we missed many of you in the initial, frantic flurry of E-mails. But I’m still reading all your messages to Rachel every day, and hopefully soon her lungs will be well enough that we can start taking calls and accepting flowers! Again, I’ll let you know!- Sean10pm, Mar 8Rachel is still doing fine… she got her right chest tube removed earlier this afternoon, and was able to (for the first time) walk to the bathroom in her room. She’s a bit tired from all the activity and because she wasn’t able to get her naps, but otherwise doing well. We’re keeping our fingers crossed that the CAT scan tomorrow morning shows little to no fluid build-up!Mom and I went to the movies today with the kids, and it was also good to get mom out of the house. Mom thinks that all the rain we are getting is nice, but she definitely misses the New Mexico blue skies. After the movie, we drove around town and had a few funny episodes where we couldn’t figure out why everything was closed, until we remembered that we hadn’t set our vehicle clock or wristwatches forward! - Sean 2pm, Mar 8This is just a quick update that Rachel is still doing well.. We were able to talk to her off/on all morning via the phone directly to her room. While it’s still hard for her to talk, she says she feels fine and is still getting the 6 hours of sleep a night plus few hours napping during the day. She was able to walk around the room a bit this morning due to the nurse urging her to try to brush her teeth on her own at the room sink. The nurse only realized that Rachel hadn’t walked much on her own after Rachel was halfway to the sink, and only after Rachel told her! So she is doing good, but the short walk made her very dizzy and tired.The nurses at the Special Care are great, and keep trying to push food on Rachel constantly. Rachel’s lost quite a bit of weight since losing all the fluid… she said she weighed in this morning at about 120 lbs, and mentally I subtract from that because it includes what must be another 10 to 15 lbs of fluid in her swollen belly area. So in my estimation, she’s hovering around 100 lbs, and by my sight, she’s certainly the skinniest I’ve ever seen her. While I wouldn’t say it’s in the danger zone, it’s skinny enough for a 5’9” person that she’s constantly being told to eat, sleep, eat, sleep, etc. Her muscles are noticeably atrophied, and so I asked the nurse yesterday about it. Her reply was that they are pushing lots of protein and calories to prevent any further deterioration. The nurse yesterday even asked Rachel what her favorite food was, and I mentioned that Rachel LOVES donuts! I told Rachel that I would bring some by every time I get out of the hospital. Lo and behold, 30 minutes later, but the same nurse shows up with a box of donuts from Dunkin Donuts! Though not protein, Rachel needs every calorie she can eat… and the nurses will get every calorie into her however they can!The only item of concern now is that, depending on which doctor you talk to, the x-rays from this morning show that fluid is again building up in her left lung, the one where they took the tube out four days ago. The radiologist sees fluid, but the respiratory doctor isn’t sure. Personally, I can hear that Rachel is having a harder time talking today than yesterday. Since the docs are arguing and both don’t want a repeat of the “crash and burn” like the last time the fluid built up (the doctor’s words, not mine), Rachel will be getting a CAT scan in the next 24 hours. Further, to head off any future confusion, her attending physician ordered a meeting of representatives from radiology, respiratory therapy, etc to make sure everyone agrees on the course of action hereafter.So in summary, we’re in “wait and see” mode again. To me, the biggest indicator of Rachel’s progress is how she feels. I asked her, and she said that she feels a bit worse than yesterday, but she also said perhaps that was because when I called the pain meds were wearing off. She said that the pain meds make a big difference, and that she thought the reason she crashed last time was because she wasn’t careful about taking them after the chest-tube was re-inserted. She said that when her chest is hurting, it’s really hard to open up and get a big breath without having anxiety, which leads to faster breathing, etc. I’ll call her again tonight to see how she is doing and will let you all know!- Sean10am, Mar 7Sean again, and I’m sitting next to Rachel and…. she is doing so much better! She is off the ventilator, they removed her chest tube from her left side, and they moved her out of the ICU and into the “Special Care” facility, all in the last few days! This is awesome news! Rachel says I shouldn’t jinx it, but I’m so so happy for her that I have to share!To give you an idea of how well she is doing, the nurses suggested that Rachel surprise me yesterday by having me show up to discover her without the ventilator, so whenever I would call, the nurses kept telling me that she was on the machine but doing well, weaning slowly. After many times of me calling them and them fibbing to me, Rachel got worried the surprise might make me frightened, especially since she was moving rooms. So I got a wonderful call from her just before my drive to the hospital, which made the drive so much easier.Of course, I am watching her closely and emphasizing rest and food, and the nurses are doing the same. She is doing so much better that we want to keep her this way! Her mom is coming in a few days, and she is looking forward to that. For now, I am enjoying helping her get cleaned up and feeling human again, and just holding her hand while we sleep. She still has a long way to go, and it will likely be several weeks before she comes home. But the last few days have been big steps in the right direction!- Sean10am, Mar 5Sean here again, and Rachel is doing better. Her nurse yesterday said that she was weaned from the ventilator (the vent set at lowest “assist” settings) for most of yesterday, and if her progress continues, that she will most likely be removed from the ventilator sometime in the next day or two. The nurse also said that they pulled the chest tube that was draining Rachel’s left lung, which surprised me since that same side had a mucus plug in it several days ago, and once the plug came out several cups of fluid drained immediately afterwards. It seems to me a bit quick to pull the tube just days after a few cups of fluid came out, but the doctors will of course be watching for any fluid build-up in the daily chest x-rays to avoid the refill problem that happened earlier with her right lung. And they have told me that it is better to take it out for short periods, even if it has to go back in, in order to prevent infection around the entry site.I’ve been home the last day with the kids and mom, and everyone is as well as can be expected. Coral and Ethan are very snuggly, and mom and I were able to go out for lunch together yesterday at the Waffle Shop. Mom really enjoyed it as there’s not anything like that in Las Cruces.Afterwards, we went to pick up a laptop computer for the road from Zoli and all the folks at PTI. They’ve been wonderful in making sure everything is going well there – teaching one of my classes, setting up this computer, watching my students and projects – and I couldn’t ask for better friends. Thank you everyone! I confirmed that I’m able to update from the road by updating the blog yesterday from Zoli’s office.As for me, I’m starting to realize how dazed I am lately because my “quick recall” memory is totally gone. The other day I forgot which month it was (February at the time) and seriously had to count weeks backward in my head to realize that we were in the Spring, not Fall semester. I forgot my grandmother’s name the other day talking with my mom. When talking to the nurses at the hospital, I reverted to my brother’s old name (Billy) which he hasn’t used in 12 years. I ran into Matt Mench at the Waffle Shop and completely blanked on his name when trying to introduce him to my mom (please don’t take it personally, Matt). I’ve lost my checkbook more times in the last three weeks than the last five years. Driving around State College, I’ve completely forgotten two or three times where I’m supposed to be going, making wrong turns, etc. Mom says she’s watching out for me, but I’m going to schedule some time with a counselor as I’m starting to scare myself. And mom says she’s going to stick around for at least another week to make sure the family is OK before she leaves.Many people have asked about our relationship together, so I wanted to put a few words down on how we met. Rachel and I have known each other for 21 years, and have been married for 12 (13 in May). She sat behind me in my freshman high-school physical chemistry class, and always kicked my seat. In retaliation, I always secretly untied her shoes or would tie them together from under my seat. We never dated during high-school – she dated a good friend those four years and hence was off-limits – but we did become very good friends. After senior year, when I was leaving for the Air Force Academy, she pulled me aside at a party and told me that she was sorry that we never were able to start a relationship and that she wanted to stay in touch. She wrote to me during basic training, and after she broke up with my friend, we went out for a date upon my return that Thanksgiving. We dated from a distance for a year and a half, at which point we realized that we were most likely going to get married. Rachel told me that she didn’t want to be a military wife, but she would for me. And I realized at the time that being a fighter pilot wasn’t all it was cracked up to be, especially since automated flight seemed to be the future (one big reason I study this area now). I got out of the Academy, moved back to our hometown in Las Cruces and spent the next few years working part time to paying off the big bills sent by the military for all the training and equipment I used. It was a hard time since I didn’t qualify for any scholarships at NM State, having turned them all down when I went to the Academy. But Rachel was by my side the whole time and we both still have very happy memories of that time despite having to stretch the monthly paycheck every way we could, and living in an apartment with barely any heat (not a big issue in warm New Mexico, but still stunk for many weeks at a time). Later I’ll tell the funny stories of my proposal to her and the birth of Coral!We love her very much, and we are so proud of how she is improving. And again, thanks everyone for your love and support!- Sean130pm, Mar 5Sean here, posting an update for yesterday and today. Rachel is still in the ICU, basically in the same condition as several days ago. There’s slight improvement, but at this point she’s just trying to recover her energy. The post below is a little sad, but that was the mood yesterday. Today she is doing a little better, and I’ll try to post another update this afternoon.(the following was written on the 4th)At home: Initial outpouring of food is still coming… we finally sent a note out to the neighborhood to ask that they collectively organize to limit meals to only 3 a week. Each of the dinners have been football-team large and we honestly can’t eat the meals fast enough! (II think everyone forgets that it’s just my mom and two kids at home). Even only counting what other people have signed up to bring from Coral’s bus-stop, the current back-log is 3 weeks, and we still have tons frozen in the freezer!! ?We live in an absolutely wonderful community, and so food is NOT a problem!Yesterday’s updates: Rachel is still not out of the clear. Based on cultures from a few days ago whose gram-stain results arrived today, her lungs were confirmed to be infected still, but with little possibility of secondary infection because the antibiotics in the fluid seemed to have killed the bacteria during the extraction. These gram-test results today are useful: they show that the strep is still growing in the lung and that the antibiotics still haven’t reached all portions of the lung due to the level of damage to the lung wall.They think Rachel will pull through, but her lung function seems worse and slower to recover than a week ago. Right now she can’t breathe on her own and requires about 60% help from the machine for mechanical breathing, and about a 50% mix of O2. The rest of her is doing much better though, other than needing fairly regular blood transfusions for reasons which I don’t yet understand. But this morning during rounds, the doctor said that hers were probably the worst pneumonia example that any of the students would see at that hospital. He didn’t mention the obvious reason for such a statement: because most people don’t survive this level of infection. He did say that she is very strong, and that her health and youth have saved her. During rounds this morning, they went through her chart again, and to me, her latest x-rays and CAT scans look the same as the first ones. This could be my ignorance. I’m still no good at reading x-rays, but I’m getting the basics: I can spot fluid in the lungs, chest tubes, etc quite easily now. And the terminology is starting to make sense: neutrophils, necrosis, bicarbs, hemes at 8, shift to left, heprin, PIC lines vs central lines, white count at 17k, reparatory at 12 over 5, etc. Her doctor’s are awesome, and the longer I’m there, the more that I learn, and the less they hide from me. They don’t seem to have any issues now with me listening in to Rachel’s rounds, whereas a week ago they tended to keep me out of it and instead summarized with a kindergarten version afterwards.My biggest fear now? That the infection will continue spreading… I’ve learned enough about pneumonia patients lately to know that she’s entering a very dangerous recovery time because of secondary respiratory problems that often come up weeks and months after the initial infection. My understanding of this delay is because the lung damage continues long after the initial infection: portions of the lung may die off, ?stiffen, or lose permeability due to damage. These areas are great for bacteria to hide out because there is little circulation to these areas, hence little antibiotics or immune system response in these locations, at least not until the tissue starts to heal and blood can flow there again. And it takes the body a long time to heal… weeks and months of weakened lung activity. This can make even a small thing like a cold quite disastrous. The good news is that the doctors say that her lungs should heal completely when this is all over.Rachel clearly has some reserve still, but not much. Watching her crash so quickly a few days ago when the fluid built up in her lungs, I got that cold lump in my stomach again like when this all started. Rachel seems to be having a harder time getting off the ventilator now than last time, and this is worrisome. The docs tell me she may be out of the ICU in about a week, with minimum 3 weeks recovery after that. But of course, they told me exactly the same thing when we got here two and a half weeks ago, so I’m less confident now. Rachel’s mom, Alice, is flying out in a few days… I think the recent downturn really scared her and made her realize how sick Rachel really is. In case the situation turns for the worse very quickly, Alice wants to be here. I completely understand, as I’m totally worried about leaving Rachel alone.I’m trying to keep Rachel’s hopes up by avoiding discussion of the obvious severity. But inside I’m getting strangely raw with emotions that swing wildly between numb and sensitized. I keep a good poker face most of the time, but the smallest things can set me off …commercials with kids in them, for example. And speaking of kids, I miss them more than ever. I see Rachel in everything they do and I just want to hug them all the time. I’ll be back in SC on Thursday and will give everyone big hugs!- Sean1240 pm, Mar 3Sorry we didn’t post any updates, yesterday—there was nothing new to report, and we were still both so sad from the setback she had Saturday that we both just wanted to focus on the daily routine with the kids and getting her better. Rachel wrote to Sean this morning that she feels more rested today than she’s felt since all of this began, and we’re so hopeful that maybe sleep will help the healing process progress. Today she’s also receiving two more units of blood to replace the red blood cells she’s losing—not sure why that is happening, and they are trying to figure it out. Sean found out this morning the results of the tests she had done Saturday night. The first biopsy came back negative, and they didn’t trust that result so they sent off another sample that came back positive, and they are culturing it as well—I don’t know what they are specifically looking for. They told Sean that as a precaution, they are adding another antibiotic to the penicillin in case whatever it is might be penicillin resistant. Sean said it appears she still has a lot of strep infection in her lungs. They are going to try to get her up a little today and will probably remove the central line, a catheter that delivers meds directly through the chest into her heart—and will replace it with a PICC line that feeds through her arm into her heart, a method less prone to infection. They are going to start supplementing her feeding with protein to try to build up her blood. We do know her lungs are very damaged right now after all they’ve been through, and we’re hoping the meds plus lots of rest will give her the strength to heal. Please continue to pray for her and know we are grateful for your caring and concern. Barb930 am, Mar 1Hi everyone,Sean went to visit Rachel yesterday afternoon, and her blood oxygen level had dropped to 79% (sets off alarms), her blood pressure was elevated, and she was taken back into the Adult Intensive Care Unit (AICU). They determined that the right lung really had not cleared as previously thought—it had just stopped draining because it had become clogged. They sedated her, re-inserted the right drain tube, and drained off a lot of fluid. They were worried they weren’t getting enough antibiotics to the bacteria because of decreased blood flow in that area, and that her pneumonia was actually getting worse. They inserted a scope and found the bronchial tubes were clear, and they biopsied a part of the infected area of the lung to determine exactly what bacteria they are dealing with—is it the same or different. They re-inserted her breathing tube, her lungs re-inflated and seemed to be expanding and contracting OK, her blood oxygen and blood pressure returned to more normal readings, and Sean said she looked much more relaxed. Sean said they were planning to do some further tests this morning on her other systems to see if there is still some secondary infection, and he stayed the night in Danville to be close in case the staff called him. He said now that she’s sedated again, she’s finally resting which she probably needs as much as medicine, although when she’s sedated, she doesn’t cough out all the stuff from her lungs. She had only managed a couple hours of sleep each day in the Special Care Unit, and just breathing, coughing and trying to talk was so exhausting for her. The pneumonia is the challenge now, getting it controlled and eliminated. I’m still very worried about her—she’s still so very sick, and I believe prayer is powerful, so please keep her in yours. Barb9 am, Feb 28Hi everyone,Rachel just called and said she sounds a bit better. She said she slept OK last night, but her coughing is really keeping her up. Of course, the doctors WANT the coughing as this is the best way to get her lungs cleared, even if it means little sleep. I didn’t get any details on the fix of her lung collapse, but that was because we were going over what she wanted to wear (which tells me that she’s doing better). Just the process of picking out clothes she needs seemed to cheer her up, but it’s still mainly pajamas at this point. She asked that I visit her this afternoon, so I am packing up for that now and making sure that the kids/mom are ready to be left alone. I’m not sure if I’ll be staying with her again for a while. As always, I’ll leave it to Rachel to decide. The kids are a bit tired because last night we belatedly celebrated my birthday (which was on the 14th). The neighbors across the street were so sweet: after they learned that we skipped my birthday because of Rachel’s collapse that same day, they baked a cake so that we might celebrate with Rachel in the hospital. But after getting to the hospital room, we realized that it was not the most sanitary place to have a cake, that the kids were having trouble not tripping over the tubes, that flames weren’t allowed, and that Rachel isn’t allowed much off her planned diet. So we did the singing/candles at home last night with mom and the kids. Of course, with all the chocolate, we couldn’t get the kids down until around 11. Not sure what to do with all the sweets! If anybody wants some, please come by what seems to be the Brennan bakery: in addition to the cake, we have four trays of brownies, dozens of cupcakes, boxes and boxes of cookies, and boxes of candies… these are all courtesy of our WONDERFUL neighbors. And of course, the girl-scout cookies arrived this week… Laugh! I’ve been giving small plates of treats to the nurses, and they seem to really appreciate it. Rachel has a big sweet tooth, so we are saving some for her, filling our freezer to the brim for when she gets back. Rachel has already asked to make another cake for my birthday when she’s back at the house, as one of her favorite things is cooking treats with the kids. Perhaps we can have a block party to celebrate her return!Sorry there’s not much to report, but it’s mainly trying to keep Rachel sleeping and coughing now, and I’m VERY happy with that!Sean12 noon, Feb 27We went to see Rachel last night with the kids, which was good for both the kids and Rachel. Rachel was very tired because she only got a few hours of sleep (from 4 am to 6 am), and was off her meds and sitting in a chair quite a while before we came, just so she wouldn’t be groggy. So needless to say Rachel wasn’t feeling her best, even compared to the day before. Though we weren’t able to see her that long since the kids couldn’t keep still, I know it was very comforting for Coral and Ethan to actually see mommy and know that she’s getting better. Coral even made a point of staring at Rachel’s oxygen monitor and cheering every time mommy hit 100%! Talking to Rachel, we learned that she had to get two units of blood transfused yesterday morning due to very low red blood cell counts. The nurse says this is normal, but of course I’m worried since the docs never mentioned this issue before. They put Rachel on Albumen just moments before we arrived, and apparently it makes the fluids inside the lungs clear out. The doctors told Rachel that she shouldn’t be transferred to State College because, if something should turn for the worse, they won’t have the facilities to handle it. They said it will probably be 2 more weeks in the Special Care unit, just learning how to walk again and getting the pneumonia cleared up.Rachel asked that I spend some good time with the kids to get them into their routine, so I’m back in SC until this weekend. I left Rachel with Barb’s cell phone so she can call us whenever she wants. So if you have Barb’s number, please do not call as it is very hard for Rachel. She can barely reach the phone, can only hold the phone up to her ear for a few minutes at a time, and has to struggle just to talk. We’ll be leaving another cell phone with her when we visit again this weekend.This morning Rachel called us for the first time (yea!) to let us know that she was able to get quite a bit more sleep last night, sleeping from midnight to six this morning. She also said that she is coughing quite a bit now due to the Albumen, which is a good thing. She just called again just moments ago saying that they plan to take her for a walk this afternoon into the hallway using a walker. She also said they are thinking of taking out the chest-tube on the right side, which is wonderful since she can do her therapy once one of the tubes is cleared. The docs also said that they observed a partial collapse of her left lung in the x-rays from this morning, something they saw before on the CAT scan but thought was due to her being off the negative pressure. Now they think it really is a partial collapse, and once they confirm it again with tomorrow’s x-ray, they will insert another tube on her left side to open up that lung. I noticed that Rachel seems to be having a harder time talking and breathing today, and that’s probably why.So she’s improving, but there are still minor setbacks here and there that we have to watch for. I keep telling myself that this is going to be a long process, but sometimes that is hard to reconcile with how fast she got sick originally. But she is definitely strong, working hard to get stronger, and knows that we all love her dearly.Sean800 am, Feb 26Sean came home to see the kids last night. Ethan was still awake, ran to the top of the stairs, and literally leaped into Daddy’s arms, he was so glad to see him!! Coral didn’t see him until this morning, when, while she was quietly eating her breakfast, he came up and said “good morning”! She, too, squealed with joy and jumped into his arms, and I’m thrilled that we have two happy kids—they were getting so stressed not seeing their parents. Rachel is doing GREAT!!! She’s in a regular room, now, and can stand for a few moments in a kind of shaky, little kid kind of way, and of course she wants to come home! She still has the chest tubes in, but I imagine once it’s safe to remove those, she’ll be able to recuperate at home, or at least in State College, maybe. We’re all going to drive over this afternoon, and the kids are SO excited about it!!!! Please keep us in your thoughts for a safe trip over—the weather seems warmer today, but it’s part of my job to worry (I’m a professional, don’t try this at home), and I’ll add more (or Sean will) once the kids are settled at school and we have a chance to catch up.1130 am, Feb 25I hadn’t heard from Sean this morning, so I gave them a call. He said Rachel stood up for a moment and moved to a chair next to her bed, so she’s getting some strength back in her legs. Her body is also going through auto-diuresis where it now recognizes it has too much excess fluid and does its best to shed it, so she’s getting rid of lots of fluid, which is great! Sean said the CAT scan showed that the lungs have been draining well, and now they can really see what’s going on. Her lungs are still very full of pneumonia, roughly 50%, so she will likely need to be on an extended regimen of antibiotics. She was due to complete them in about 4 days, but she’ll need to stay on them until she clears. It’s very important for her to do her breathing and coughing exercises, too, to get rid of it. At that point, I could hear lots of talking in the background, and Sean said the doctor had just arrived, and he would call me back. I was going to wait to and post until after they called, but I’m thinking some folks might be wondering (as I was), so I thought I’d let you know everything I know at this point. I’ll add more as soon as I hear from them. We’ll all see if this posts OK—I usually have the site up all the time, but for some reason it was completely down, but I think everything is reestablished, and it should be OK, now. Till later… Barb 945 pm, Feb 24Sean and Rachel called and talked to the kids on the speaker phone, and it was the first time Coral and Ethan have heard mommy’s voice in over a week! They both had grins from ear to ear after talking with her and were a dream to put to bed tonight—no mystery why. Rachel did have another CAT scan to check her lungs and intestines scheduled for this evening, and it may be finished by now. She was getting ready for it when they called, and since they are both exhausted, they just wanted to go straight to sleep after, so we said our “goodnights” and “sweet dreams” and will wait until tomorrow to talk again. Sweet dreams to everyone else, too—I say a prayer every night for anyone who might be reading this both to thank you for your thoughts and prayers and to keep you and yours safe, as well. Barb730 pm, Feb 24I drove over to visit Rachel this afternoon, and she’s doing SO much better. She’s in a regular bed, now, and she’s able to control the amount of incline herself, so she’ll be able to sit up when she wants or lie down and rest when she’s tired. She talked very softly because her throat is still a little irritated from the tube, but she was very alert despite the pain medication. Of course she asked about the kids, and she asked how I was doing (too sweet!!), and I told her how great all her friends and neighbors have been to all of us. We talked about how sick she had been, and she seemed to want some idea of when she’d be out of there. She said she felt ready to go home, and Sean asked her to pick up her breathing tube—a small, VERY light plastic device that helps her make sure she’s breathing and working her lungs correctly. She very slowly reached for it, very slowly raised it up, and could barely get it to her mouth. Sean said, “are you sure you are ready to go home?”, and Rachel said that maybe she needed just a little more rest, but THEN she was going home! She’s so determined, and I’m so glad!!! She’s always focused on what CAN be, not what is, and I know it won’t be long at all before she’s back, again, discovering more ways to clean up the environment and make the world a better place. The drive over and back was so beautiful! It reminded me of the Cloudcroft area of New Mexico with the highway winding through the pine covered hills, and the ice “waterfalls” frozen onto the rocks were amazing!! I must admit it was SO relaxing to plug in my ear buds and listen to my tunes during the drive. We’ve watched Barbie and the 12 Dancing Fairies more times than I can count, so Aretha, Christina, Fergie, Jason, Keney, Will.I.Am and the rest provided some welcomed relief, and I can face the fairies, again!!!UPDATE – just talked to Sean, and he and Rachel had a real meal, together—chicken and rice (real food!!!)—and some banana tapioca that Sean ate, and they might take her down for another CAT scan of her lungs tonight to see how she’s doing. And before too much time passes, I owe a HUGE thank you for the support, nourishment and sanity they’ve provided to all of us to Mike and Becky Wittrig, Cari Gustafson and her family, Maura and John McConnell, Todd and Tara Baney, Lisa and Bill Groves, Carol Ewton, Michelle and Steve Siegfried, Dawn Russell and her family, Robin Walter and her family, Michelle and Bill Steudler, the CEE Faculty and Staff, Sean’s Research Group and co-workers as well as Coral and Ethan’s teachers and classroom helpers and probably many, many others. If I’ve spelled a name wrong (or had the name completely wrong!) or left someone out, please forgive me and accept my thanks for everything everyone has done for us—we SO appreciate it, and I personally couldn’t have made it this far without you!!! I know Sean and Rachel share my feelings and will thank everyone personally once things are “normal” again. Barb 940 am, Feb 24MORE GREAT NEWS!!!! Rachel’s feeding tube was removed, as well, and they’ll start her on liquids, today. She’s doing so great!! She’s getting her back pounded on (percussion) to clear her lungs, and it left her a little breathless, but it’s another step closer to “all better”! Ethan was so happy to be back at school and see his friends, and we all made it with Coral to her bus without any drama, today—whew!!! It’s a beautiful day!! 750 am, Feb 24GREAT NEWS!!!! Rachel got her breathing tube removed, and she’s breathing on her own, now!! WHOO-HOO!!! She also got to listen to all of us on the speaker phone last night, and I think that made her very happy!! Will post more after the kids get off to school and things settle down, but we are SO happy!!!!Barb500 pm, Feb 23Just talked to Sean a while ago, and Rachel has been resting, taking little cat naps all day long. The big event for today was that they used a lift to get her seated in a recliner, and she was able to sit up for while. Sean said the doctor poked his head in this morning to tell her that she was very lucky. The doctor told her that she had the same thing—her blood going thru toxic shock—that caused the death of Jim Henson, the Muppet guy, and she’s doing remarkably well coming through it. She’s so strong, and we’re so proud of her!! Sean said all of her doctors have been amazing, and he’s so grateful. Sean also sounds much more relaxed, too, now that he can be with her, and he’s even allowed to use his phone in the room so he doesn’t have to leave her to update me. He said the goal for the next two days is to build up her core strength. I know everyone wonders what the timeline is, and we really don’t know, but we do know she’s getting better every day. I personally try to make myself be patient by remembering it can take up to two weeks for a simple bruise to fade away. I’m sure this toxic shock must have “bruised” her entire body, and it will take a little time and a lot of prayers to be good as new, but I’m sure she will get there. Robin Walter just came by with a wonderful dinner and got to see Ethan’s raspberry from this morning, when he wasn’t running around with a blanket over his head!! Thanks so much, and thanks, too, for the laughs about raising kids. Ethan really IS just like Sean was at that age!! And Mike called to see how the kids were doing and see if he could help with them while I visit Rachel—I appreciate that so much, and I’ll talk to Sean. I told Mike the kids were running all over the place laughing, so I’m guessing they’re OK, but I’m not so sure about me—just kidding!! Thanks so much to everyone in the neighborhood for all your help—we SO appreciate it!!!! Barb1030 am, Feb 23Sean called to say that although Rachel still is has the ventilator tube, she was breathing on her own for another three hours earlier this morning. She’s focused on trying to get off the ventilator so she can talk, but she was a little more tired this morning because of all the work she did yesterday, and that’s to be expected. They corrected a slight kink in her right chest tube, re-stitched it, then drained off another liter of fluid, and have been getting her to cough in order to help clear her lungs. Sean says coughing is a little difficult and tiring for her, but necessary. She’s passing LOTS of fluids, now, which is terrific news!! She’s asked to see me (it made me cry!), so probably I’ll drive over this week sometime to visit with her. Sean is able to stay with her as long as he likes, now, which is wonderful! She still has limits on visitors, so be sure to email Sean and check if you plan to go over.Coral is back to school, today, and seemed very excited about it! She carefully explained to me everything about her routine last night, from what kind of lunch she usually takes to exactly what goes into her red folder. And this morning before she left, she inspected her lunch to make sure it was OK, and said, “Grandma, I only need one cookie, two is too many—they’re a treat, you know—so you can put this one back.” She’s so cute!! I met some of the phenomenal neighbors on the way to bus stop, and Ethan and I took a little tumble when we tripped on a raised part of the sidewalk, but we’re OK—just some little scrapes. We both cried just a little—we get so emotional over the littlest things anymore. Everything seems more important and everyone more special since just a week ago, and I’m sure I studied something about that side effect of traumatic events at some point, but reading about it and living it are worlds apart. I’m sure our “normal” will always be slightly altered from what it was before, I’m sure there are many caring and wonderful people around us, and I’m sure beyond doubt that prayer works (I thank you from my heart).I just want to give a quick “shout out” to my friends and co-workers at White Sands Missile Range—I miss you all, I worry about the work you might have to take on because I’m not there to help, and I hope (no, I know) you understand. I talked with Donna for awhile last night, and it was good to get caught up on the news—thanks so much for calling, and thanks for understanding when I had to call you back because it was bath time. I’m learning to be patient (is that a big whoo-hoo! I hear?), and I’m learning to be humble while I’m reminded every day that there is nothing I can do to “hurry” or “fix” this. And I’m reliving my past—30 years ago when I was, for a brief time, a single mom with three boys aged 6, 4 and 2. It’s much harder, now, and I couldn’t possibly do it without the fantastic support and help from all of Sean and Rachel’s wonderful friends, co-workers and neighbors here in Pennsylvania! I sure miss my New Mexico friends, too, and please know I’m thinking of you and hope all is well with you!Barb900 pm, Feb 22Sean called and said Rachel has been moved to another room—she’s now in the AICU, the Adult Intensive Care Unit at Geisinger. She’s being fed mostly through the tube in her stomach, now, and she is steady enough to point to a chart and spell what she wants to say. Sean senses a lot of frustration in her—she wants to be up and about right now—and we both agreed we wouldn’t expect her to be any other way. He’s been reading everyone’s emails to her, and she enjoys them immensely and wants them read to her over and over! Until later, happy dreams!Barb800 pm, Feb 22I talked to Sean earlier this evening, and he said Rachel was able to stay off the ventilator for about 3 hours today breathing on her own, and she did some limb exercises, too! This afternoon, she motioned to Sean by moving her arms up and down, and Sean and the nurse finally figured out that she wanted to exercise, again. She’s absolutely determined to get stronger and get off the ventilator and out of the bed, so probably the next challenge will be to make sure she also gets enough rest to allow her body to heal. The kids are doing fine—Coral had fun over at Mike and Becky’s today (that was so sweet—thanks so much!). I was waiting until maybe Sean called back to see if there is more news, but not sure if he will—he wants to spend as much time with Rachel as he can, and he has to step outside the CICU to call. I’ll close for now to put the kids to bed, and will add more if he calls back. Thank you all so much for your prayers! Barb9 am, Feb 22Sean here again, back home for a few hours after just returning from the hospital where I was visiting Rachel this morning. She is doing absolutely great, and followed me with her eyes right as I walked in at 4:30 am this morning. We “talked” via her head nods, and she let me know that she was not feeling much pain, that she was comfortable other than her feet being a bit cold, which we fixed. Her improvement is awesome the past 24 hours, and the nurses/docs are all elated at how well she is doing lately.Now that she’s waking up, she’s started to ask questions, first about her mom and my mom - whether they know about her, their plans, etc. I gave her all the details I could, and she seemed relieved that I talk to both probably a half dozen times a day. She told me late last night that she remembered everything I told her when we were just using “blinks”, but this morning she was very curious about what had happened to her body this past week, and what was next in store for her. And so I summarized everything that had happened. There were multiple times that she seemed very shocked, probably most so when I told her how the docs weren’t sure she was going to make it, and that roughly 60% to 80% of people who get this type of pneumonia combined with sepsis don’t make it. (In fact, yesterday’s nurse mentioned that the list times she saw this was in a close friend, and that he succumbed to this as well). Rachel was also shocked to hear about the 70 lbs of fluids they put into her, and I teased her for weighing more than me. Of course, she didn’t think that was funny! She was also a bit worried about her stomach as she said it feels sore, and I told her that right now there are no plans to operate and that the doctors think her intestines will recover soon on their own.Of course, she asked again about her class, whether her research group was doing OK, if Peggy Johnson (her department head) knew everything, etc. I told her everything I knew, that everyone knows what is going on, that everyone is helping out, that I have this blog, etc. Rachel wanted even more detail than I could give (like which person was covering which lecture, etc), but I told her I didn’t know and that she shouldn’t be worrying about that now. Peggy just dropped by and said she would be visiting soon, so that should put Rachel’s mind to rest.As far as medical updates go: Her lungs had a bit more fluid drained this morning when they were moving her, which is normal as her body is starting to shift over to secreting all the fluids built up thus far. Some more good news: she’s on the minimum ventilator settings possible, they are switching her over (slowly) from intravenous nutrition to stomach-tube, and there’s talk that she may be allowed to breathe on her own in the next few days. And actually, when I was there this morning and they were shifting her, her tube came off (and HUGE alarms went on), and she just kept breathing like normal. That made me so proud… she’s definitely getting stronger. Since there’s at least a half-dozen MDs reading this blog, here’s some more detail: here white blood cell count is now at 41, up from 37 yesterday pm and 34 yesterday am. This is high, but her bands (neutrophils) are down to 3 from 4 yesterday, and so the blood response is considered normal for the level of infection she went through. Her lactic acid is still at 2, and her blood pressure is steady around 120/80 despite no meds, steroids, or non-maintenance fluids. Oxygen levels are steady despite turning down the respiratory machine to minimum levels, and she is at 40% O2 (the minimum setting for the machine). Her liver enzymes are decreasing and almost at normal, and her kidney function is good based on creatine levels. Bowel sounds are good. And digestion is good based on tests of what comes out. So again, good news all around!As for me and the kids, the kids are doing great under my mom’s loving care, and they will be at school again tomorrow. That’s good, because they are literally bouncing with energy from being confined this past week. I’m still having a bit of trouble sleeping, despite getting some exercise yesterday. The hospital sent down a counselor to see me the other day and she asked how I was coping, and I told her how this week reminding me of swimming in the ocean. Whenever we visit a beach, I like to swim WAY out to sea, several miles in fact until the waves rise around me and block the view of land. When I’m so far out, alone, I often get that gut-level fear that I can’t make it back. And even when I start swimming back, there’s a long time of swimming where it seems like all the effort is leading to no visible progress… that land will forever be too far away, with only waves trying to push me under. That’s what it felt like this past week emotionally: swimming toward land, but with view of the beach appearing only briefly. Fortunately, I felt my foot touch land this past day. Even so, I still worry that she is not out of the clear, and I’m not sure I’ll ever be completely “over” this. Last night’s 5 hours of sleep were filled with dreams of Rachel reaching out for me. And I must have checked the clock 100 times during the night, not wanting to miss seeing Rachel this morning at 4:30 am before they made me leave at 7 am. When I arrived finally at her bed-side, I could tell Rachel was also worried about something. With only yes/no responses from her, I couldn’t answer her question for the longest time. She kept pointing at the wall and finally held up 7 fingers with great effort, and I realized suddenly that she was talking about 7 am. I asked if she was confirming I had to leave at 7 am? She nodded a vigorous “yes.” I told her the rules of the hospital: no cell phones in the ICU, no visitors other than immediate family/friends, no kids under 12, no sleeping in the patient rooms, and no visitors from 7 to 11 am. She was sad, but then I told her I was driving back today to check on the kids for at least an hour. She was quite happy for a second, blinked, and then looked mad. I then asked her: do you want me to stay longer with the kids? She nodded yes. Or spend more time with her? No. I told her that I wouldn’t be able to be there for her, to read her slight signals that the nurses often don’t see about her pain, etc… was she OK with this? Yes. I asked if I could come back during the kid’s nap this afternoon, is that what she wanted? Yes. I finally asked if she would promise to try to rest, and she nodded yes. I gave her a kiss, and then she held up her hand pointing at me, and I asked if she had a question about me? No… and this time with more pointing at me again. Are you trying to tell me you love me? A vigorous “yes”!What a wonderful day this has been! Though I’m sure she’ll be upset I spend this little time typing, I had to share with everyone and the kids are eating a snack anyway. Also, if you want to E-mail me messages to read to Rachel, please do so (I’m starting to read past messages to her lately). She’s anxious to hear from each of you, and sends her thanks for all the prayers, messages, and help so far. Thank you so much!Sean845 pm, Feb 21Sean just called to say Rachel is still awake and alert, can move her arms and legs a little, and now nods her head up and down or back and forth or shrugs to indicate her answers. She even put her arms down to try to lift herself a little, but understandably can’t quite do that, yet. She really wants the ventilator removed, but she’s not quite ready. The nurse told Sean that Rachel is now being assisted at the lowest possible settings on everything, so that’s REALLY good news. So much progress in one day!! He’ll stay with her for a little while longer, but said he won’t call back again tonight because he wants us to rest, too. More good news tomorrow, I’m hoping, and happy dreams to everyone!Barb 700 pm, Feb 21I just spoke briefly with Sean. I called him for an update, and he didn’t answer so I assumed he was with Rachel. I admit it still gives my heart a little pause not knowing what’s going on when he doesn’t pick up right away. Anyway, he called back, and yes, they were “talking”—she was awake—WHOO-HOO!! He said the simplest (and most wonderful!) conversations take awhile because he does the talking and she blinks, but she’s alert. He asked if she wanted to talk about something in the room, and she said no. Did she want to talk about her illness or treatment, and she said no. Did she want to talk about her students, and she said yes. That made me smile—it’s so like her, so I know she’s really alert. Sean assured her that he personally checked, and her classes and students are being covered, and she relaxed. He said “here she is nearly on her deathbed and she’s asking about her students, can you believe it?”, and I told him, yes, because he’d be exactly the same way if it was him! He asked her if she was in any pain, and she said no. Then he asked if she wanted the pain medicine decreased, and she said no. Did she want the pain medicine increased? No. Did she want him to stay by her bed? Yes. Did she want him to rub her back? Yes, so he did. She heard and knew Sean had gotten a call, and Sean told her it was me, and she wanted to know that the kids were OK, and that’s why he called me back. I told him they were fine, watching a movie and eating a wonderful dinner that Dawn fixed and brought over along with Mike, and that I saved some for him, too, for when he comes home. I told him that after the kids found out this afternoon that mommy had opened her eyes, they were literally bouncing off the walls in their play area downstairs. They just jumped and ran around the basement for about a half hour, they were so excited. He said Rachel would be so happy to hear that, and he was going back into the CICU to tell her. I’m not sure I’ll hear from him again, tonight, but I’ll post an update if he calls. Your prayers ARE working, and we are all so grateful!!!Barb130 pm, Feb 21Sean just called, and it’s the BEST NEWS!!!!!! Rachel opened her eyes!!! She was very bleary and disoriented, seemed shocked by all the news of her illness, and Sean explained she still had a lot of meds in her body that made it too hard for her to move. With the tubes, she cannot speak, and she clearly was fighting them, but Sean explained why she needed them and she settled down. He established a means to communicate by having her blink once for yes and twice for no. He asked if she could hear, and she blinked yes. She became very agitated when she found out that Coral and Ethan had been sick, but Sean reassured her that they are fine, now, jumping around and playing, and that grandma is home with them, and she appeared very relieved. He asked her whether she had a lot of pain, and she blinked a hard “yes” and started crying, so Sean asked the nurse to get her some more meds. He explained to Rachel that when she’s on the pain meds, she’ll be asleep, and she seemed torn as to whether or not she wanted them, but she clearly was in a lot of pain. She seemed confused as to why she hurt so much, so Sean told her about everything that happened, and he said she seemed to understand perfectly and calm down a little. He explained most of her pain right now might be because of the tubes draining the fluid from around her lungs, and that they will help her heal faster.A couple days ago, Coral sang Sean a song, and Sean said “why don’t we record you singing it for your mom?”, which they did. Sean played it for Rachel, and the words go, “I love you a hundred, a hundred and one, a hundred and two, a hundred and three...I love you, I love and oh I know you love me, too, more than the stars that twinkle in the sky, more than the grains of sand in the shimmering sea…I love you a million, a million and one, a million and two, and million and three, oh I love you, I love you and oh I know you love me too. ” and after the song ended, Sean said everyone, including the nurse, was in tears it was so sweet. The nurse told Sean to warn her when he was going to play it again. Sean said Rachel’s eyes followed him whenever he walked around the room, and he is sure she fully comprehends what she hears and sees. Then Sean sat with Rachel while the pain meds were administered, and she immediately drifted off to sleep, again. Sean sounded SO happy, and I’m so happy, too!!!!! We just finished lunch, and the soup was outstanding! All the dishes we’ve received have been big hits with the kids, and I personally think this neighborhood has some of the best cooks around! Coral and Ethan loved the cupcakes, too—thank you Todd and Tara, that was so sweet of you!! I know Rachel will want to thank everyone who has helped us out, too!! Barb11 am, Feb 21Just want to update this so folks don’t start to get nervous. I haven’t heard from Sean, so I called him, and he’s working out right now so I told him to go ahead and keep exercising and I’d talk to him later. I’m glad he’s working off some of the tension he’s had—I know he needs to just so he can relax, and I know, too, that the CICU is basically closed to everyone between 7 and 11 each morning, so I didn’t expect any real news until after 11 am. Andy, Sean’s stepdad, and Rachel’s friend Debbie Apodaca both called this morning, so it dawned on me that normally I’ve posted by now with the “overnight” news from Sean. As I told Andy, I was very encouraged by the procedures they did yesterday—it’s a big step forward, in my opinion. Anyway, I’m taking the kids over to Target and to gas up—want to take advantage of the beautiful, sunny morning and clear streets we are currently enjoying and just get the kids out a little. Thank you, Debbie, for your kind encouragement and prayers, and thanks to everyone else as well—I know they make a difference—and I’ll check in with Sean as soon as I return, probably in an hour or so. Mike brought over some soup from the Siegfried’s that we’ll enjoy for lunch—thanks so much!!Barb630 pm, Feb 20Sean just called with some updates about Rachel. The tubes were inserted, they successfully drained off about ? liter of fluid near each lung, and it appears she is breathing much better. Her respiration rate went from 44 breaths per minute to roughly 22, likely due to the lungs being able to expand more. They’ll continue pumping out fluid as long as the tissues are “weeping”—releasing the excess fluid—and have taken her back into xray to determine if any large pockets remain. That’s the last of what they plan to do today, so when the xray is finished, she’ll be able to rest. Also of note is that when she was under the short acting anesthetic, she exhibited a pain response during the procedures. They of course upped the medication to give her relief, but they told Sean her reaction surprised them. They didn’t anticipate she would be that alert, and it’s a good sign. You know, we hold onto the little signs like a child holds onto an ice cream cone—so precious, so wonderful, such a happy dance celebration! Will post more tomorrow—wishing a safe and warm evening to anyone reading, and we thank you so much for your prayers. - Barb400 pm, Feb 20Sean is back at Geisinger after a quick run home to see the kids and get fresh clothes. He called to say Rachel had a full CAT scan this morning—head, chest, abdomen—to see what’s going on. She was groping around as they moved her, but is still not responding to her name. Her head looked normal, but her chest and abdomen have huge pockets of fluid, particularly under both lungs. They gave her a short acting anesthetic to insert 2 drain tubes next to her lungs, a procedure not so much surgery, more analogous to inserting tubes for collapsed lungs. She’ll have another scan after the procedure to ensure the tubes are placed correctly. Her oxygen levels were still OK, but not at a level where they can remove the ventilator. They are still very gradually switching her from the nutrition tube to a regular feeding tube. Her white blood cell count was 32 this morning, but up to 37 this afternoon, so they will be giving her different antibiotics thinking the mixture she had before may have upset the microbe balance in her intestines, and that may be causing her white blood cell count to escalate. He said she is still carrying about 40 extra pounds of fluid, and they found a little blood and protein in her urine, so they’ll be watching her kidney function as well. They told Sean that all of this is not abnormal for someone who was as sick as she was. She’s also been moved into a bed than gently rocks her from side to side every 20 minutes to improve her circulation and prevent sores. Sean will go back in and see her once they finish inserting the tubes, and possibly he’ll provide another update later this evening—if so, I’ll be sure to post it. Need to get back to the kids right now—I think Ethan is awake from his nap. Barb930 am, Feb 20Just a quick THANK YOU to Maura for shoveling us out this morning! Boy, the snow is so beautiful, but I’m thinking it’s enough, now. Wouldn’t want too much of a good thing! She and all the other neighbors (Mike, Lisa, Cari, Carol, Leslye and probably others I don’t even know about) have been absolute godsends to us, and we appreciate it SO much!! The kids and I went to the doctor yesterday for checkups, and they switched Ethan’s meds to the same as the rest of us are taking. He now has an ear infection, but otherwise everyone seems to be doing OK—just normal stuff—and they should be good to go back to school on Monday. Sean called and is on his way home to see the kids. I know he misses them so much, and it’s been so hard on his emotions splitting his time between the ones he loves so much. He’ll be so surprised to see the driveway all cleared for him—thanks, again! I’m sure he’ll do another post, and as of last night, Rachel was still resting, which is good. I apologize for not posting before I went to bed, but it was an emotional time for me—I had a good cry after the kids went to sleep which I’m sure I needed—and I just couldn’t write. We are all so impatient and hopeful she’ll come around and awake, soon, but we understand it takes time after being through so much. Keep up the prayers, and please accept our love and thanks for your caring and concern. Barb (grandma)1230 pm, Feb 19th Sean called with another update. Not much change in her response, but her intestinal tract is kicking in, which is a good sign. First movement had some blood in it, but the second did not, so they figure the first was just her system flushing itself. They’re going to try her on a regular feeding tube instead of the nourishment supplement they’ve been giving her, so they’ll be switching those out this afternoon. Sean said a GI specialist will be checking her to make sure everything is OK. I asked him if she was still intebated, as I couldn’t remember what had been removed, and he said yes, she will be until she’s completed awake. That’s all the news at this time, and I’ll update the post when Sean calls again. Barb (AKA grandma)11 am, Feb 19th The posting is a little late this morning because we all slept in a little, finally. Sean called about 30 minutes ago and said as of last night, Rachel is more responsive and moves her head toward him, but she’s not squeezing his hand nor responding to other simple commands. He stayed with her till 1:00 am, and then returned to his room and slept really well. He’s excited to see her today and understands she probably won’t be able to talk or respond to commands for some time since it will take time to come out of the effects of all the meds. He said the first order is to get her awake enough to be able to evaluate any pain she might have as that would be an indicator of anything else that might be wrong. He’ll give me a call once he’s able to see her this morning. Normal visiting hours are from 11 am to 9 pm, and the staff doesn’t want anyone around between 7 and 11 am so they can accomplish their patient care. The kids seem to be doing OK today—playing and not fussing as much—so I think they are feeling better. Ethan had a tough time going down last night because he was just so tired, and Coral crawled into my bed in the early morning hours asking if it was OK since she didn’t have her alarm set to get up in the morning. She has another day home with Grandma just to be sure we have 24 hours covered on the current antibiotic. Coral and I (grandma) have appointments this afternoon for another checkup, so we’ll get confirmation, then, that she’s good to go. I know Coral misses school and her friends, but I feel better being too safe than sorry. I heard an odd scraping sound this morning, and when I looked outside, Mora (forgive me if the spelling is incorrect) was shoveling the driveway—thank you SO much. She said she figured I wouldn’t know what to do with the snow, being from New Mexico, and I told that her to me, snow is something we just look at and say, “gee, isn’t that pretty!”. We don’t normally try to do anything but play in it unless we absolutely have to go somewhere, and then we’d just wait a couple hours until it melted. For my co-workers at White Sands Missile Range, we had enough “weather” here yesterday to have closed the post and sent everyone home. I need to add for those in PA that I travel over the 5,700 foot San Augustin Pass through the Organ mountains every day to go to work, so a little snow on the ground at home or work usually means unbearable conditions in the pass and fills anyone who has to travel it with dread. It’s snowing again, today, but so far, no accumulation. I’ve already seen more snow in the last two days than I’ve seen in the past two years. And so you know, I so appreciate everything everyone has done for us. Everyone has made it so much easier for all of the family to give our best to Rachel. 7 pm, Feb 18thJust got back from the family doc… Coral is fine, but they switched her to the same meds as Rachel just in case (since we know they work). Roads are fairly good, so I’m leaving soon to see Rachel. Thanks to all who E-mailed me about the vehicles, it’s overwhelming how many people are reading this. More news as we find out more. Sean3 pm, Feb 18thThis is Sean again, unexpectedly back from the hospital. I rushed back after getting the test results on Coral’s strep test from a few days ago – Coral is positive for the same strep, same group that Rachel has. Freaking out, I asked mom to re-check Coral’s temp again immediately, and she’s sitting and holding at 101.3. Though she’s acting normal, her cheeks are definitely flushed. Worse, my mom who is watching the kids also has a fever too, 101.2 an hour ago, 100.3 now even with ibuprofen taken an hour ago. We are all going in again in a few minutes to see the family doc. Ethan and I tested negative, and neither of us has a fever either. Mom is convinced it’s a girl thing. And despite being sick herself now, she is trying to keep my hopes up. She jokes that perhaps we can inaugurate a Brennan family wing at the CICU! I’m so glad she keeps me smiling despite this horrible emotional roller coaster (and perhaps you all see where I get my perverse sense of humor). The good news is that they are trying to bring Rachel out. This may take hours, it may be a day. It’s hard to tell as her liver function is way down, and based on how slow it’s been so far, the nurse thinks it may be tomorrow before she’s responsive and can talk. I’m hoping I can be there for her. I’m feeling really stretched now trying to be a good daddy and husband. Between the two, I think any preventative measures with Coral are better than me simply sitting there with Rachel, watching the wonderful care she’s already getting. But still, it breaks my heart that she may come out this soon alone, looking for me, with only the news that her daughter is also sick. If I can be confident Coral is OK after this next visit, then at least the doctor can reassure Rachel with the same news. And perhaps I can even make it back to Rachel’s bed-side to help. I may be looking for someone with a good 4WD vehicle to drive me there early evening, since I want to leave our 4WD vehicle with my mom, just in case. If you are reading this and can help, just shoot me an E-mail and phone number. I’m not sure what will be involved with Coral, but if it involves the ER this may take a few hours and we’d be leaving at 7 at the earliest. If the roads really stink, then I’ll most likely stay home (and safe).We love you all, and let’s hope this blog soon stops being a nail-biter... Sean9 am, Feb 18thI just heard from Sean with three updates. Rachel has been taken off the sedation medicine at least for awhile. She’s exhibiting low response right now which is probably normal since it will take several hours of wearing off to determine how she’s really doing. She’s also been off the blood pressure meds for awhile, and her blood pressure is completely stable now—great news!! Also, her lactic acid level is dropping. It was 2.2 today which they say is normal for sick people. As a reference, it was at 3.5 during the day yesterday after dropping from 3.7 yesterday morning. I’ll post again when I have more news, but what we have heard this morning is so encouraging!11 pm, Feb 17thThis is Sean’s mom providing the latest update since Sean stayed in Danville tonight. We all drove down earlier today in two cars so I could bring the kids back home, and it was my first time to see Rachel. I understand from Sean that she looks amazingly better—her color is coming back, and she’s not as swollen as before—but it was still such a shock to see her so ill. It literally took my breath away, and it’s difficult to write about it even now, but I’ll try because Sean asked me to. I talked to her briefly while Sean watched the kids in the waiting room and told her how much everyone was praying for her, how happy I am that she has such a strong will and to please keep being strong. I think it helped the kids, too, to see the place where their mom is staying and hopefully before too long they will get to visit with her. Sean called back just awhile ago to say he fell asleep in the chair next to her bed holding her hand the way they often fall asleep, and it’s the happiest he’s felt since she became ill. He said when he stroked her hair she seemed to understand and have some expression in her face, and her hands and feet feel warm, now. She’s completely off the blood pressure meds and is doing a lot of the breathing on her own. The staff inserted a tube in her vein this evening to provide nutrition and bypass the intestines in an effort to “starve” the bacteria causing the infection there. As of today, she’s expected to be in the CICU for a week, and then two to three weeks of recovery if all goes well and no surgery is needed. The kids are fine, comparatively speaking. They are both coughing and on antibiotics, just to be safe, but they seem sick in a refreshingly normal way. Sean mentions again and again how much he appreciates everything everyone has offered and done for all of them. And from my perspective, Sean and Rachel are truly blessed with amazing neighbors, friends, coworkers and associates who have generous and loving hearts, and your prayers and help have made a difference that this mom appreciates more than you could ever know. Thank you to all of you and please keep praying for Rachel’s continued improvement. 12 noon, Feb 17thWe just returned from the Centre Medical, and though it’s just preliminary, Coral’s lungs look pretty good to my untrained eye (especially since I’m comparing to recent experiences with Rachel’s x-rays). Her blood work is getting done now, so we’ll have a second route of confirmation too. Coral was so brave giving blood, and said she wants to stay healthy for mommy. Based on my daughter’s active behavior, I think she will be fine. If all this hadn’t just happened with Rachel, we wouldn’t be worried about her now.Literally seconds before the needle went into Coral’s arm, we got a call from Dr. Walsh, Rachel’s doctor at Geisinger. He relayed some wonderful news: They’ve been able to wean Rachel off almost all her blood pressure medicines to where she’s down from three different medications to just one, and even this is at relatively low dosages. Her kidneys have kicked in quite well this morning and she’s now starting to really put out fluids, a good thing because she’s gained 25 kg, roughly 40% of her original weight just in fluids and meds they have had to put into her. He said it will be several days, but that her body is already starting the process of flushing everything out.The other great news is that, via recent blood work cultures that came back, they’ve nailed the cause of all this in the first place: Group A streptococcus. This was the going theory from near the beginning, and so the doctors did a great job figuring this out so early and treating accordingly. If you jump online and read more, you’ll see that Rachel was very, very lucky to have done so well fighting this.Final bit of good news: the anaerobic infection was confirmed with the experts this morning to be in large intestine, and the lactic acid release of this into the blood stream seems to be slowing down. This might be because her circulatory system is kicking in more normally now, that her body is trying to fight it, etc. The doctors are confident they can beat that, and even have as a last resort the possibility that they can remove the portion of infected intestine, if necessary. At this point, they don’t think that this will be needed, and think that the “wait and see” approach is best. So good news all around! Mom will be driving me over there permanently this afternoon, as she wants to see Rachel too and needs to learn the route to the hospital anyway. Even the weather lately is helping us out as the roads are perfectly clear, and we are getting blue skies for the first time in quite a while. Rachel will be kept under sedation in the ICU for at least another day, and I’m guessing at least until they are sure they don’t have to operate. It would be awful to bring her out for a few hours, only to put her under again for intestinal surgery. And they assure me it’s better for her pain and recovery that she stay under during this hard time.But the slope is very positive as is our spirits. This is the best “blog” I’ve yet been able to post! Keep sending her your good thoughts and wishes! – Sean 9 am, Feb 17thCoral’s fever came back the past few hours, 100.3 steady temp. Normally would ignore this, but on doctor’s advice scheduling chest x-rays for her now. – Sean 7 am, Feb 17thQuick update since there isn’t much change: Rachel was stable last night, and based on her body response, they say that physiologically she seems to have been sleeping the whole night. I was able to finally get some sleep too (8 hours), and I think it’s sweet in a way that she and I are still on the same sleep/wake cycle. They were able to reduce her blood pressure medicines just slightly, again giving her more reserve and allowing her body to transition just a bit more toward natural function. They gave no hint that she’ll be out of this soon, which is telling me that we have a few more days of watching and holding where we are. They still aren’t sure about the source of the infection, but think that it might be in her bowel area. This may be just speculation… they are bringing in a GI expert this morning to consult. They were hoping to ID for sure last night, but didn’t find this until pretty late last (around 9 pm) and everyone had gone home. The nurse said that they are most concerned with identifying this right the first time rather than getting it out fast, if only so they aren’t doing unnecessary procedures or meds when she’s so vulnerable. I wasn’t able to talk with a doctor, so I’m sure I’ll find out more once he calls me back. I’ve noticed that the night crew is noticeably reduced in manpower versus the day crew, so it’s harder on the nurses that I’m constantly calling. They much more often tell me to call back later. After the fourth “call back later” this morning, I think they could tell that I was starting to freak out and told me that they were just busy giving her a bath earlier, and so couldn’t leave her alone. The doc at the ICU last night said I could visit tonight with some rules: 1) if I didn’t have a fever today and 2) strictly wore a face-mask. He said I’d be fine since I’m only going to be sitting next to Rachel anyway, not going from room to room. They reminded me again that they would prefer not to have visitors coming through if given the choice, and that kids younger than 12 are strictly forbidden.I’m really looking forward to seeing her, if only so that I can see what’s going on and avoid the “everything is OK” filter that seems to naturally happen when I call in. The last two times that I was briefly home and called back, I learned later that I wasn’t exactly getting the straight news, or that they were telling me the status at that very moment. I don’t fault them, as I’m sure it’s easy for them to forget that I may not be aware of crises that may have happened just a few hours earlier. The priority today is the kids, making sure they are OK and settled. Ethan had a very rough time yesterday… this is the longest he’s been without his mommy since he was born, and he’s definitely getting emotional about it, just collapsing in tantrums every now and then. I completely understand and wish I too could just collapse when that feeling hits, as it often does. Coral is doing better… she’s naturally more withdrawn than Ethan, but I notice that she is snuggling me more often and hugging harder than she used to. On the health front, she has no sign of the slight fever from yesterday. I’ll keep checking on her. My sinus pressure went away, and I think the credit for that goes more to getting some sleep than the antibiotics. So things are looking better on the home front too, no doubt due to my mom being here and mothering us (she said she would send me to my room if I didn’t listen to her!)Of course, I’m going to be cautious today about making a decision to visit her, if I do. I’m so torn about being near her if I could have any chance of causing her harm. But I miss Rachel so much and want to know what is happening to her. I hope we know more soon, but no news now is very good news for now. Keep sending her your love,Sean6 pm, Feb 16thGood news first: Rachel is still stable and for some time now they haven’t had to tweak meds to compensate for fluctuations in O2, blood pressure, etc. So she’s now officially listed as “critically stable”, which seems an improvement from whatever she was classified earlier.The bad news: there’s something new showing up in her blood that’s indicative of lactic acid. They’ve been compensating for it, but they notice a steady increase in the compensation required, which means that bacteria are growing somewhere that they haven’t found yet. Talking with the nurse, the type of bacteria that do this are anaerobic, so the only way they can survive in the body is that there’s some pocket of infection somewhere walled off from the oxygen supply. If they find that pocket, and drain it / surgically remove it / whatever, then the problem goes away. So they are hunting now. Fortunately, anaerobic bacteria grow relatively slowly, so they think they can find it quickly relative to the speed at which this can become a problem. The latest course of action was a full body CT, looking for possible sites of infection. They pretty much know it’s in the core somewhere since the blood supply from the extremities is so small, and so the doctors are scanning primarily shoulder to hip looking for what might be causing the blood chemistry changes. So she’s stable, they know what they are looking for, and are taking steps to find it. This is all very good news, and I’m hesitantly optimistic at this point.As far as the original infection in her lungs and blood, the docs are almost sure at this point that it’s some type of strep. I still haven’t heard any official news yet on the blood cultures (they take a few days), but that’s the working hypothesis right now and explains the rapid downfall, the devastation of the immune system, the lungs, etc. Related to this, they asked that the whole family go in to check for pneumonia, strep, etc so that we don’t get hit with the same thing she did. The kids and I spent the afternoon getting checked with the family doctor, and we all came back negative for pneumonia and the quick strep swipe test – which apparently only catches major cases. They are doing a culture now. They did mention that my throat looks noticeably red, and hence asked that the kids and I avoid school for the next 48 hours. We are all on antibiotic regimen now just in case.Talking with Rachel’s nurses, they asked that I get some rest and not visit the ICU with the possibility of strep, at least not until the antibiotics kick in, which will take at least a day to day and a half. This is so depressing: the emotional part of me misses my soul-mate and feels somehow that my being there can help, but the rational part of me understands. They are not only worried about the other patients in the ward fending off whatever is going around, but they said there’s undoubtedly other nasty bugs in the CICU that I could very easily get if I’m up there with a compromised immune system myself. They said they do not want two patients to care for instead of just one. It will be at least a day until I can see her again. I plan to use this to catch up on rest.Of course, I’m watching the kids like a hawk, checking their temperatures constantly. Ethan and I have temps that look fine, but Coral is a bit elevated at 100.3, so I’ll be watching her closely. Funny thing: when picking up antibiotics at Target, the pharmacist recognized me from when I picked up meds for Rachel last Friday, and was surprised to see the rest of the family getting antibiotics as well. I gave her the story, and she said that they are going through antibiotics like crazy the past several days, that something bad is sweeping through town. So if any of you out there are reading this and are “getting by” with a chronic cold, watch your temps closely and see a doc if you have elevated temps, even if briefly.Again, thanks everyone for the outpouring of generosity. Our refrigerator is full, and we’re starting to ship food over to the neighbors to borrow their freezer capacity. Everyone has been so great with their well-wishes and offers of help, we couldn’t ask for more. I’ll know more soon on the CT, and as always will share just as soon as I find out… Sean11 am, Feb 16thGood news: Rachel’s condition is improving steadily. They were able to take her off a very aggressive respirator system to something more natural (to avoid damaging her lungs), and her vitals are still stable. They were also able to take her off the paralysis medicine so she’s just under the equivalent of anesthesia, which is also a wonderful improvement. She’s still completely unconscious and not able to communicate, but as they were transitioning medicines, they were able to bring her out enough (temporarily) that they confirmed that she’s responsive to her name, and can voluntarily move her arms and legs. I can’t tell you all how happy I am even at this news.I’m at home getting my mom ready to handle the kids on her own, but may be calling on friends to help her with basics like finding the grocery store, etc. This afternoon I’m taking myself and kids into the acute care center to get checked out. Rachel tested positive this AM for strep and pneumonia microbes, so it seems the strep knocked out the immune system which allowed the pneumonia to take over. The docs are concerned that me/kids could be under the same teeter/totter situation and not know it, so we’re getting tested. Immediately afterwards I’ll be heading back to Geisinger, most likely to stay until Rachel comes out. (future posts may be from my mom).Your prayers are working… thank you all!Sean4 am, Feb 16thI’m just getting back from spending the entire day at the CICU at Geisinger. Rachel had a rough night last night (the 15th), with a team of doctors working on keeping her going. Found out from one of the doctors later that they didn’t think that she would make it last night, but that she is remarkably strong. Her blood pressure kept dropping down to 60/40 despite all the meds they could give her, and the trouble that they are having is that every time they get the blood pressure stabilized, the oxygen levels go down and vice versa. Apparently, the meds that help one hurt the other, so they were walking a tightrope for quite a while. To make things more challenging, they can’t keep her at the level of meds they have her on now, as they don’t have any reserve for when other stuff comes up. Further, they can’t measure her oxygen well since all her limb circulation is so low, so they are taking blood constantly to check for blood-gas. As a systems guy, I keep thinking of competing feedback loops on a minimally observable system, and just wish there were some optimal control algorithm that would give the best balance as quickly as possible. The docs are absolutely incredible, and I find it amazing how they have a network of knowledge – constantly picking up the phone calling their colleagues around the country to get details on the latest research (literally days old) on interactions between various drugs. We faculty have a lot to learn from them!... Folks around here say that this is one of the best CICU facilities in the country, and I can see why.Right now Rachel is actually doing much better. Her vitals are stable, pulse is good, oxygen levels OK, and they’ve even been able to back off a few of the critical meds to give some reserve. So the day ended on a good note. The biggest indicator that she is doing better is that I’m allowed to touch her again… up until around 2 pm today (the 15th), her vitals would all collapse every time anyone would move her. For a while last night, one of the ways that they were stabilizing her was finding spots on her body and torso to touch and lift to keep her going… it was almost mystic how they were hovering over her and watching how every little move would affect the vital readings moments later. Of course, she had a standing order not to be touched for unnecessary reasons. Now that she’s doing a bit better, we were able to get her hair braided and cleaned up. The doctors say that she’s away from the brink, at least for now. So that’s very good news. If this trend continues, the docs say 3 or 4 more days in the CICU and she should pull out of this.The other GREAT news is that they are now able to detect an immune response, so her system is finally starting to recognize the infection and is starting to make white blood cells to attack. Go Rachel!We also had a few visitors today – Aman and his family drove all the way out here to see us. That was so sweet! I’m not sure they were ready for what they saw, as they seemed very shocked at her state. The doctors were very nice and let them in see her briefly, although right now no visitors are actually allowed (especially children) due to her immune system being down and the fact that the room is almost wall-to-wall equipment and tubes. For a while today they had her room sealed with a positive-pressure system, but thankfully that was lifted by the time Aman and Cameron arrived. It was really good for me to see some recognizable faces for a while. As for me, I think the only way I’m handling it is remembering how she would want me to be strong for the kids, and so I’ve been tucking away all the emotion. It’s really hard sitting next to her, seeing that she is struggling so much, and being unable to help her. I’m trying to be strong for her, but I can’t help just breaking down every now and then, and I’m completely unable to sleep anymore. Since this all started 3 days ago, I think I have had 8 hours, and each time I’ve been waking up sobbing in my sleep and of course more tired than when I went down. The most relaxing thing has been the 100+ mile drive each way, which reminds me of all the cross-country trips Rachel and I did together (one of our favorite things when we were younger). The kids don’t really understand… I think Coral might, but Ethan just thinks she’s on a trip. The neighbors across the street have been amazing, helping out watching the kids, keeping the house going, etc. Of course, Coral and Ethan love playing with their two kids (and toys! And cats!). The other neighbors keep sending food, so the funny thing is that our refrigerator is completely packed yet I keep forgetting to bring food with me on the trips there. Also, my mom arrived from New Mexico just a few hours ago to help the rest of the week.Finally, thanks for everyone out there who has sent such an outpouring of good wishes and offers of help! We love you all so much, and I’ll try to keep this page updated whenever I can.Sean10 am, Feb 15th(first posting)It’s with profound sadness that I’m sharing the news that my wife Rachel is quite sick. The good news is that she is still alive.We brought her to the hospital yesterday morning (Saturday) as she was running a fever from Friday night, and had difficulty standing up without getting dizzy. They quickly diagnosed a massive case of pneumonia, that her immune system had shut down due to the level of infection, and that the infection was spreading quickly to remainder of her lungs and surrounding tissue. Throughout the day yesterday her blood pressure and oxygen levels kept dropping, despite massive infusions of fluids, antibiotics, and pure oxygen. At about 3 pm, she was unable to continue breathing on her own, so they induced paralysis and put her on a ventilator. Despite that, her oxygen levels continued dropping, so they put her on a different type of ventilator with both positive and negative pressure, and this was able to temporarily bring her oxygen levels back up to where they could rush her to Geisinger in Danville. Throughout the night, they had trouble keeping her blood pressure and oxygen levels, and around 10 pm her body had shut down circulation to her limbs to the point where they had significant trouble getting blood samples. But finally about 1 am they were able to stabilize her in the sense that nothing seems to be getting worse. Currently, she is still barely hanging on. The doctors still don’t know the cause, but hope that we are past the low point. They say that, if nothing more comes up in the next 4 to 5 days, she will make it. They tell me she will most likely be kept paralyzed and sedated for a week on the ventilator in intensive care, with possibly a few more weeks of recovery after that. They said that, given her age and strength, she may pull out of this quickly. But they also warned that, with her immune system shut down, she’s very vulnerable. They told me to be ready for worse news, but that this was unlikely. We have family flying in now from New Mexico to help with the kids, arriving this evening.I’ll be in the next week in the mornings, but will probably be in zombie mode and focused only on keeping my classes going. Please accept my apologies that I’ll be missing our meetings for some indefinite time from now. I’m also unable to reply to E-mails when I’m away at the ICU.Please keep her in your thoughts, - SeanOld page follows?NOTE: this is truly a “portal” page. For more information about my group, please see the research website below.Website for research:Research Lab website?My Department Page (Bio, Summaries, etc):BrennanClasses I teach or assist with:ME415, Senior Design Projects (project advisor Spring 2006, Spring 2007)ME450 , Modeling of Dynamic Systems (formerly ME440) (Fall 2004, Fall 2005, Spring 2006, Fall 2007, Fall 2008)ME452 , Vehicle Dynamics (Spring 2004, Spring 2005, Spring 2006, Spring 2007, Spring 2008)ME456 , Robotics (Final projects in Fall 2004, Fall 2005, Fall 2006)ME597D Advanced Mechatronics (Fall 2004, Fall 2005, Spring 2007, Spring 2009)ME597F Advanced Vehicle Hardware-in-the-Loop Methods (Spring 2007, Spring 2008)??Conferences and Service Activity Websites I maintain:The International Forum for Road Transport TechnologyArchived Presentations from the 9th International Heavy Vehicles Weights and Dimensions Symposium ................
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