Oh the glorious hot days of summer have arrived at last!!! I am not a super-fan of the insane humidity that comes along with it here in the Illinoise, but its WAYYYYYY better than wearing sweaters in May. Way better. At least for the non-metabolic issue peeps in this house.
I feel like this antibiotic schedule of Kendall’s has sucked my will to live or at least to blog about living the past week! And just when I thought the end was in sight (Saturday), her doctors decided to leave her on ALL THREE MEDS for another 4 days to cover her for any possible problems that will (inevitably) arise from the testing Kendall is having this Wednesday/Thursday.
And now that I am so beyond tired that i can’t remember what my original point was going to be with this post, i will just do a quick update (don’t i always say that and it turns into like a fifteen page essay???)
anyways – we are up at CHoW now in preparation for Kendall’s manometry testing tomorrow morning. Basically it would be funner to have both of our toenails ripped off one by one – she because she has to have guidewires threaded throughout her GI system (and yes that includes a set that goes up the exit ramp) and then lay relatively still for five hours without the benefit of pain meds, nausea meds or make her sleepy meds. And me, for, well the obvious. I get to be the one making her lay still. They will “challenge” her system with a combination of liquids, foods, and then medications (if warranted) to see what the inherent function of her gut is, and if it fits any definable disease pattern. The problem is – everyone knows her gut function is less than optimal. We don’t KNOW if it fits a disease pattern simply because we can only guess what parts are working properly based on what we observe with our eyes. This testing will help pinpoint if there are any obvious areas that can be fixed/bypassed/addressed with medication. Or it could just confirm that Kendall has “crappy Kendall gut disease" by showing a pattern of dysfunction that doesn’t necessarily fit any one diagnosis, leaving us with still no clear plan of how to help kickstart her gut function. Among other fun things is the list of things that could go wrong as they are placing the probes: bowel perforation, translocation of gut bacteria to the bloodstream, translocation of gut bacteria to the abdominal cavity, puncturing other visceral organs, massive bleeding, minor bleeding, and one other thing the resident added at the end that he said – but if that happens we would have to abort the procedure entirely. I wish i could remember what it was….probably for the best that i don’t. Not that any of those things are LIKELY to happen – i just hate having to sit through the “risks of procedures” three times and keep hearing the same things. Also i am operating on about 12 hours of sleep total since Saturday nite and it is NOT a pretty sight…everything irks me right now. also they had nothing good in the cafe so my breakfast lunch and dinner was a snickers bar from the NICU waiting room vending machines (the only ones I could find without a mile and a half hike over to the ER). so not adding to the picture of fun-ness around here.
and now i get to try to get a few more hours of sleep strung together on the six wooden box contraption they call a bed, and hope they don’t call a “code black” again cause of the crazy thunderstorms raging outside up here in milwaukee. code black means we all schlep into the hallway, iv poles, oxygen tanks, metal cribs and all. Except parent bed/couch thingies do’nt go out. So we either stand, sit or sleep curled up on the floor. We spent two hours out there earlier, and I’d really love to not have to go back out there tonite!
So ready for this day to be over. And tomorrow too. Not trying to wish away time – just wishing that my time didn’t have to be spent doing THIS per se. I will try to get my attitude and blood sugar up a little bit better in the morning. sorry for the whineyness to tonite’s update.
Thank you to those of you who so faithfully pray for Kendall and our entire family. Ben has been in PA all week for work, and will be home for two days before heading back there next week also. Thanks to my mom for rearranging her life again to come be with the big girls, who are VERY anxious to start their actual summer break (that doesn’t involve mommy and sissy in the hospital) next week (even though school ended on Monday for them!) We could all definitely use a few prayers tomorrow morning especially – that the testing instruments and probes are easily placed in Kendall without any punctures of anything important, that she is somehow able to withstand the torture of laying still with these things impaling her, that I do’nt pull out ALL of my hair before noon, that we actually get discharged tomorrow evening as planned, and that the testing would reveal some useful, helpful, GOOD information for us to know how to help kendall better!
(and maybe for something yummy for breakfast in the cafe in the morning!)
thank you all so much –