27 Dec: She came home sick Christmas eve and now daughter #1 holds the record ( by far) as the family member to get the sickest EVER. She’s been in the Lafayette Good Sam’s ICU for the past 36 hours, with the flu AND strep, on broad spectrum antibiotics, about to go into emergency surgery to remove “something.” She went into septic shock after her immune system was apparently overwhelmed. Thought we might lose her last night.
28 Dec, day three of Phoebe’s 2014 Xmas ordeal. She’s doing better, but not out of the woods yet. For the 2nd time we’ve been told she does not have the flu. Apparently there is some issue with the flu causing uncertainties in that realm of disease management this year. First she doesn’t have it, then she does, then she doesn’t again. Sheeesh. The Ear/Nose/throat specialist, Dr. Armstrong removed her tonsils late Thursday afternoon and did some exploration to try and find the infection’s source, no luck. The good news is she is stabilized and the antibiotics seem to be working. Another CT scan and ultrasounds were done yesterday. Today they plan to do an thorocentesis on the fluid in her chest to check that.
By Sunday afternoon (today) the ICU attending physician, Dr. Bodini says he did not like the looks of the thorocentesis, so they inserted drain tubes in both sides of her chest and took more x-rays. The day nurse is saying she is positive for flu (again) and strep (quick test). No explanation for why we don’t have a definitive answer on exactly what she’s come down with yet, except that it is obviously some kind of very bad infection. She is being kept sedated.
So at the end of the day, the good news is she’s not trying to die on us. Bad news is she will likely spend at least the next week in ICU recovering…
29 Dec: Another CT scan this morning and basically no change in her condition – which is good. Respirator oxygen levels are down (good), with minimal pain and blood pressure meds being administered. She is still being kept sedated.
30 Dec: She looked alot better when I left the hospital last night – not all swollen and puffy. This afternoon they plan to insert another drain tube in her lower back to get a pocket of fluid that can’t be reached with the chest tubes.
31 Dec: The patient continues to improve, albeit VERY slowly. She’s been conscious from time-to-time and communicating with us and the staff by nodding her head. They tried stopping the respirator this morning, but she was still unable to breathe on her own. Lab results are finally in and it turns out she has the flu and THREE strains of bacterial infection found in the tissues removed last Thursday afternoon: Staph, Strep and something called fuso bacterium nucleatum. Sheesh.
She’s been put on a different antibiotic, supposedly one of the most potent we have. There is no prognosis at this point. It’s a day-to-day evaluation. She should continue improving on her way to a full recovery. Things are looking up, but not nearly quickly enough, IMHO.
1 Jan 2015: I’m told no need to worry (right) but she had a fever last night and respirator o2 needed increased from 30 to 45%. Plan for today is another CT scan (that’ll make 4, IIRC) focusing on suspect areas around her throat and upper chest.
Phoebe’s first day of 2015 ends up pretty grim as far as I can tell. They had to turn the oxygen back up and she still cannot breathe on her own, albeit longer than the first try yesterday. Today’s CT scan revealed another pocket of septic fluid in her chest that cannot be reached with any of the three presently inserted drain tubes. So tomorrow they will add a fourth. She appears to be in quite a bit of discomfort during her brief waking periods, trying unsuccessfully to cough before she gets another shot of pain med and drifts out again. She wants desperately to communicate with us, but can’t. Poor kid.
2 Jan: She is really struggling to cope with her situation. We have a picture board used to communicate, and she repeatedly points to the one that says “I want to go home.” But she still cannot breathe on her own, having painful pseudo coughing spells where she is trying to cough, but can’t. Today I learned the reason she is still on breathing support is because the infection spread throughout her body including her lungs, so now she has pneumonia. The only things she has going for her is she is young and she is in the right place. The staff at Good Sams has been terrific. They are doing a wonderful job taking care of her.
3 Jan: Another CT scan was taken late this afternoon. Swelling now seems under control and diminishing since yesterday, but she continues to be feverish, and remains sedated, due mostly I believe to difficulty and pain related to coping with the breathing tube. One of the nurses noted drainage from the first two chest tubes had slowed considerably, so removing them was on the table. There was also talk of having her sit up and possibly get out of bed with assistance, and discussion of the criteria or conditions for removing the breathing tube at some point hopefully in the very near future.
4 Jan: Phoebe’s ICU activities today consisted of assessments and maintenance. Breathing is improving, so they will consider attempting an “extubation” in the morning if that still looks good. The swelling around the throat and neck that threatened to cut off her trachea all last week has subsided considerably. Infection drainage from the first two drains is way down so they may come out as well. Of course the antibiotic is continuing, but blood pressure support medication was removed, and she is still being sedated most of the time. She remains feverish to the point of needing a machine-cooled pad to hold her temperature to a safe level.
It looks like tomorrow may be the day she turns the corner.
5 Jan: The corner does certainly seem to be turned today! Fever is down, meds are down and she is up – lucid and communicating. Antibiotics are reduced. There is some formula the infectious disease specialist uses to determine those levels, but it is going in the right direction. She is still getting regular doses of Tylenol and Phentonol for pain. She is being slowly weaned off breathing support. This is a risky step that again, uses some formula determined by the doctor. There remains an issue with a pocket of fluid too close to her spine to tap that remains unresolved. it is the only blemish on what I’m characterizing as our first really good day since the ordeal began.
I expect a determination to remove the breathing and feeding machines any day now. Hopefully she will be back home with us to complete her recovery by the end of the week.
6 Jan: mostly good news today! Breathing tube and two chest drains are out. She is talking oK (f-bombs and all), but has the worst cough and chest congestion I have ever heard. Feeding tube will probably come out tomorrow. Dr. Johnson, infectious disease specialist, remains concerned Phoebe continues running a low grade fever. They expect to keep her in the ICU at least through the end of the week. Today we also learned that when she is eventually discharged she will continue on an intravenous antibiotic for some time at home. Michelle has been staying at the hospital all day and most of the night – overnights as well the whole first week or so. I made an extra trip today to fetch eyewear. TV time all day every day, now that she’s out of the woods.
7 Jan: Today the first two (of 4 total) chest tubes and the feeding tube came out. She still needs oxygen, but breathing well on her own. She is doing breathing exercises and starting a little physical therapy consisting of simply getting out of bed with assistance and shuffling around the room with a walker for a minute or two. She is very weak and frail from the ordeal, but in good spirits, now that she can talk and text. They did another CT scan to assess conditions for removing the remaining drain tubes. Preliminary opinions seem to indicate at least one if not both will be removed tomorrow. If that happens she would be moved to an intermediate care room. We can’t get any firm estimate, but I’m thinking she might be coming home this weekend.
8 Jan: Today Phoebe had the last two chest drains removed and moved out of the ICU to a regular room. She is still very weak and not allowed to get out of bed without assistance, but seems otherwise none the worse for wear at this point, despite losing 10lbs. from her already too skinny frame (IMHO). They are telling us she needs physical therapy after two weeks in bed. I’ll be expecting her to be discharged from the hospital any day now. We got her a new puppy.
10 Jan: Phoebe was rumored to have been ready for discharge today, but it didn’t happen. The infectious disease specialist wants another white cell count before they let her go. Maybe tomorrow.