Alex is feeling better. His stomach still hurts, but the fever is gone for now. The plan is to start half strength feeds tomorrow. We will start back at 5 cc/hour and see if his fever comes back. Please pray his pain stays under control.
Alex is so loved at this hospital. We are so blessed that when we are here he is surrounded with people who love him and are so very kind to him. he woke up about 9:30 this morning and minutes later was already involved in a music session with Christine. Music Therapy is Alex's very favorite thing to do at the hospital. If he could spend all day playing and making up stories with Christine he would. She had no sooner finished when Stacy his favorite Child life specialist came in and whisked him away. I got to enjoy a peaceful shower and Alex went to the playroom to make me a surprise. He also did plenty of visiting with all his nurses. When he woke up this morning his first question was "when can I see my cute Dr. Koenig". I knew she had clinic this morning so I told him it wouldn't be until this afternoon. So it was much to my surprise when right before 10:00 Dr. Ka nd Lakeesha popped in! They told Alex they just couldn't stay away. What an amazing team we have!
I quickly discussed with Dr. K and Dr. P the frequency of Alex's fevers. They are pondering why Alex gets So many fevers. Dr. Koenig has said that none of the rest of her patients get fevers as often as Alex. It would be a pain anyway, but the central line just complicates matters. Even if we are 99% sure we know why he has a fever, because of the line we cannot take any chances and it just means that the safest place for Bug is in the hospital when he spikes a fever. I also asked once again about Buggy attending school. The matter was quickly put to rest as Alex cannot seem to handle any time in groups of children without getting sick. They did both agree to allow him to participate in cub scouts in the fall!
Thanks for loving us, praying for us and walking this journey with us.
Ali
I'm sorry you guys can't catch a break from these back-to-back hospital stays. I wanted to chime in about the fevers- Eithene runs them all the time. Frequently we know why: infection. But about 1/4 of fevers we never can pin to a source. And at this point I mean high fevers. There was a time when we followed our hospital's typical "line protocol" of admission w/cultures and sepsis rule out for any fever over 100.4F. Hmmm. That happened essentially EVERY day.
ReplyDeleteBecause of E's serious autonomic dysfunction we were eventually able to agree that we won't do sepsis work-ups for a fever less than 102.2F (39C). Even with this caveat, we still have multiple fevers every month that go over our limit, that we never can find an infection for. This last week she's had blood cultures done twice for fevers around 103. But, since she has had these fevers while on 2 IV abx, and an IV anti-fungal, we are pretty certain it's autonomic irritation from something.
I hope that you can find the source of Alex's fevers that aren't infection-related. E definitely had fevers just from feeds. They are a lot of stress on the body. Another possibility I found in my research was carnitine deficiency- that can also cause fevers. Thinking about you guys!
Jessica
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