17 Jun Change of Plans
Posted at 03:34h
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Keegan is not necessarily doing any better. A few more smiles today and much less bleeding. But we did decide to bring him home this afternoon. We know that giving him blood would make him feel better, but his counts have been stable the last two days. As a transplant patient, we tend to wait longer to transfuse Keegan because every transfusion can introduce antibodies that could complicate things in the future. Keegan is also holding on to about 3 extra pounds of fluid right now. If we gave him blood, we would have to chase it with additional lasix to prevent completely fluid overloading him. However, if we misjudged the lasix and dehydrated him at all, we risk challenging his kidney too much. It is certainly a difficult decision because of the fact that we are sure the blood would help him feel better. The risks are just too great right now.
Once we saw that his labs were fairly stable today, we were faced with a no-win decision. (1) Go home today and possibly be home for just a day or two due to another fever, or (2) wait it out for another day and night, be there in the middle of the night if he does spike a fever for blood cultures, and hope he stayed stable enough through the fever to go home. How the next two days will go as far as the fevers that have been so very difficult on Keegan go is anyone’s guess though.
It basically came down to one thing though. Keegan looks and feels like absolute CRAP. Unfortunately, we do not have a single lab results/test result/biopsy result that tells us exactly why or what we can do to make it better. Since there was nothing we were realistically going to do to help him in the hospital over the next day and a half, we decided to come home. The team made it very clear that it is likely Keegan will be back inpatient before the end of the weekend. I think we are all praying that’s not the case though. Maybe this will be Keegan’s weekend. Maybe things will start to go his way.
I have to say that is difficult to imagine right now. Six weeks ago, Keegan would have run out of the hospital like his hair was on fire. He would have demanded to see the trains and “his fish” in the garden before leaving. A month ago, he could make it half way across the skybridge to the parking lot from his room before stopping to catch his breath. Today…well, today, I had to carry him from his bed all the way to the car. Until today, he would run into the backyard once we were home and refuse to come in until bedtime. Today, I had to carry him from the car to the couch where he stayed until BD came to see him.
Other than playing (from the couch) with BD and showing off a bit when my friend, Charlotte, came with dinner, he has had zero energy whatsoever. He is certainly feeling the moody side-effects of the steroids, but the crazy energy they should bring has not shown up yet. Tonight, we are praying that this is the beginning of a period of improvement for Keegan. We will update with more information soon. We are certainly appreciative of your prayers now especially. Thank you!
