30 Sep Update
Oh my gosh, tomorrow it will be October! What?! I can’t believe it’s already time for fall, but I could be duped by the upper-80s/lower-90s temps we’re still having here in Texas. Still, I love fall with my whole heart and soul. I’m the crazy one who’s favorite holiday is Thanksgiving (don’t even get me started on people that skip Thanksgiving for Christmas…is there anything better than cool, crisp air, football, crazy family, and tons of food? I think not.) I miss fall in Tennessee because it was really autumn!! A whole season, as opposed to here where there are only two seasons – hot and a-little-less-hot. But I digress, you really stopped by to check on KEEGAN, so here goes.
Keegan was discharged from Children’s yet again on his heart transplant-aversary, in case that wasn’t clear from the last post. We still are a little baffled as to what happened. It could very well have been a really bad bout of Keegan’s version of a kinked or overlapping intestine that we failed to capture during a sonogram. Another thought came out of meeting with our doctors and the ostomy/wound care team though, and so we’ve pursued that end successfully since then. If you remember, Keegan was treated with an anti-vomiting medication at the beginning of the year that all but stopped vomiting that some of the GI docs was due to a motility issue combined with “cyclical vomiting” or “abdominal migraines.” We stopped it in April when Keegan’s liver went haywire because there was some, albeit very little, evidence of liver complications on this med. Now that his liver is stable, we readded the medication, and low and behold, Keegan’s g-button has not been leaking like crazy, he’s gained some weight back, and no pain episodes in two weeks!! We’ve also shifted most of his feeds back to the daytime (a major step back in reducing his tube feeds, but not insurmountable) when he seems to be able to process his feeds better. It seems quite evident that Keegan still has some hefty motility problems, and maybe it was time to “hit the reset button” as one of his doctors put it. The plan is to leave Keegan on this medication as long as it is working and no other problems arise.
Additionally, we have noticed in the last few weeks that Keegan is not responding well enough to his GCSF shots, which help to boost his white blood cell count. We are still waiting on confirmation from hematology, but we anticipate going to needing the shots again every other day. If he gets sick, we obviously go back to shots every day. We will also meet with his immunologist in the next few weeks to discuss additional measures to boost Keegan’s defenses throughout this winter.
That’s about all the medical news fit to print at this point. We have been trying to get outside every minute we can, and Keegan is really enjoying it. Winter lock-down is in full effect, so the only places he goes are home, the hospital, and therapy (as long as they don’t get too many kids out sick). We’re just praying for good weather to stick around for awhile!
There are a few new pictures in the September photo album to wrap up the month. Updates may be fewer and farther between if Keegan stays well because we won’t be able to do much around here. Thank you for continuing to care and pray for our family. We’re nervous about making it through the coming months, but we know the Lord will provide no matter what awaits. Thank you so much, and Happy Fall, y’all!!
Maddie
P.S. – Have you voted in the Children’s Miracle Network/XBox Great Gameroom Giveaway yet?? Then, what are you waiting for?? XBox will donate the Ultimate Gameroom to the THREE hospitals that get the most votes. You can vote 10 times a day, every day throughout the contest!! How great would it be for all the kids at Children’s Medical Center Dallas to have such an awesome gameroom available to them? Hurry! CMC is only ranked 50th now, so….
VOTE NOW!! http://xbox.childrensmiraclenetwork.org/