25 Feb Survival
I know it’s not very interesting, but I feel like that’s what the last week has been about around here. Several people have asked how Keegan is, how “we” are.
We’re surviving. Just doing the day to day and trying to be ok with it. The same that we do every day. I suppose though that in Keegan’s world, boring is good.
All of Keegan’s issues are about the same. His GI problems are still really, well, problematic. One day is bad, the next very bad, the next…hey, not so bad…and so on, with no discernable rhyme or reason. Bleh. Although we do have a GI appointment coming up on Monday, and we are anticipating running a very unusual and random test. It holds the possiblity of being absolutely no consequence and the answer, all in one. SO, we shall see. I will certainly update more about that next week.
Keegan’s heart is still good, and his labs are fairly stable. We finally got a copy of the kidney testing results today, although we still haven’t been able to actually speak to his nephrologist about them. His weight (fluid retention) was down just a touch last week when he was day admitted for his infusions and breathing treatment. I can honestly say that I never thought I would be happy to see his weight down! Even if the number on the scale was down, you can see it in his face and feel it in his hands and feet. I hate, hate, hate going to change his diaper, check his pump, and refill his tube feed bag in the middle of the night and feeling those little swollen feet. Makes my heart sink every time.
It also seems that we have all finally kicked the viral nonsense going around this house. Probably shouldn’t say that because tomorrow morning, someone’s nose will start running again! Keegan has also started waking up in the middle of the night every single night the last two weeks, anywhere from 1 to 3 hours. We’re hoping it’s just a phase that will pass soon. Needless to say, we’re all a little sleep-deprived at this point.
Other than that, we’re just keeping our heads down and trying to move forward a little bit more every day. We are still on “lock-down” at the house (hospital, therapy, and home only) until the flu season calms down a bit. Audrey is doing well and growing, growing, growing. She keeps us smiling every day, just like her big brother.
Well, that’s about all my little brain can put together tonight. I will try to update with more intelligible information soon, but I don’t promise anything at the time being! Until then, please keep our friends the Akemans and the Aldridges in your prayers. Both are struggling with so many things, and we are in prayer for them constantly everyday. We’d love for you to join us for Angie, Avery, and John Christopher’s healing. Thanks so much, y’all. More soon…and hopefully some pictures soon.