The past month or so has been all over the place. Casey will act like she is getting sick, then as soon as we are ready to call the doctor she has a great day. The great days became less and less and eventually turned into not so bad hours so we did get her checked out. Last week her doctor ran a bunch of tests and determined that Casey has a pneumonia and that she is very anemic. A healthy hemoglobin for Casey would be 12-14, and last week Casey was at 8.1.
In April her hemoglobin fell to the low 7’s and we had to get a blood transfusion before heading home. Casey has what is called gastritis. She has been having issues off an on for a while since her previous gtube started to have so many issues. while things are better since closing up the site and moving to a jtube, she still has frequent GI bleeds. The ulcer in her stomach will bleed and make her very uncomfortable. When it gets bad she can even reflux (throw-up) old blood. Every so often her body will have a hard time creating enough blood to compensate for this loss, especially when her body is hard at work fighting off a pneumonia or other infections.
We have had Casey on antibiotics and increased respiratory treatments to help the pneumonia. She is clearing stuff out and slowly but surely we are seeing improvements. We added iron supplements last week to help with her anemia, but she had a bad day on Saturday with more GI bleeding than usual.
Her doctor had us take her back in for follow-up labs today. The hospital was prepared to admit her for a blood transfusion if the labs looked bad. The labs were not great, but the difference was pretty small. She is now at 7.7. Being that she is starting to get over the pneumonia, there is a huge risk of her getting very sick if we take her to the hospital right now. She has a compromised immune system on a good day, and when she is already sick, exposing her to the germs found in hospital (especially this time of year) is very scary. We are going to keep her home for another week and see if we can get her count up with iron instead. Hopefully if her body is not having to fight off the pneumonia much longer it will better be equipped to rebuild her hemoglobin count. We will get her labs checked again next week and go from there.
Hopefully if we can stay home and have a nice quiet week of recovery labs will look much better next week. We hope everyone has a wonderful Thanksgiving. We will post updates next week when we do the next round of labs.
Casey is the current cover photo for Mommies of Miracles, and I thought I would share the picture with you all. An old picture, but one of my favorites…
