19 Sep Eye of the storm
Another long day in the ICU. I can’t quite get an eloquent post up tonight. Just wanted to share a few things:
- Bleeding seems to have stabilized without any more IV clotting factors today. His blood counts did drop to critical levels this morning, but we transfused him, which gave him a good little bump today.
- Keegan remains pretty well sedated today and will through tonight. We will start to wean his pain meds down and wake him up a bit more tomorrow.
- He is not urinating spontaneously right now, only in response to IV diuretics. His numbers are trending the wrong direction but not dramatically. He begs for water when awake. We are praying this is a temporary set back that his kidneys recover from without much more intervention.
- His inflammation markers are starting to slowly go down. His coagulation factors are stable today.
- The team is rounding out a bit more research at the moment, but they think he may have been fighting this for a long time. It might even explain away the HUS.
- This morning was a bit tenuous, with hematology and rheumatology having a vigorous discussion about the next step. The bleeding and continuously increasing inflammation had everyone on edge today. Hematology was ready to come down with “the hammer” to treat him (i.e. chemotherapy), and it sounds like cardiology was on board with that. Rheumatology made a great case for trying one more drug today before we go there. So we gave him a big dose of a second drug this afternoon to target the protein that “eats” up the platelets and attacks the protein release of antibodies. Tonight, he gets the last dose of “big gun” steroids.
- The team is not ready to say Keegan is out of the woods yet. They are calling this the calm in the eye of the storm. Many kids relapse, and hard, as the steroids are weaned. There is not a lot of data supporting the “milder” drug we started today, but what exists is quite persuasive. At any rate, we are all willing to try the least harmful treatment first while it appears he is handling things ok.
That’s about all the news fit to print today. We had to have a lot of other serious discussions today with the team, but we are all cautiously optimistic that Keegan will beat this, just as he always has. Thank you so much for your prayers and support. We are truly blessed.
