Alana hasn't been well. We've been spending a lot of time at the doctors and I mean at A LOT of doctors. There has been many talks about "progression", "overall deteriorating condition" etc. We have been applying "band-aids" to her and that's all. While she has appeared good to a large degree, this has come via increased fluids, increased pain/neuropathy meds, more down time including sleeping, and more breakdowns. She is incredibly swollen due to the third spacing (google is your friend and her heart has been under strain from this. Her GI system has almost completely shut down to the point that none of her meds are really working for her anymore and as some of you might remember she's been battling a simple sinus infection since November.
With this being said, Saturday morning at 6am we will be on our way to Cincinnati Children's Hospital until at least the 20th. She is seeing EVERY specialty this time and having many, many, procedures, and surgeries. Some of the testing is extremely invasive and complicated but what we can learn from it might help prevent even more surgeries.
Some of the tests being done are colonic manometry as well as antro-duodenal manometry. These require a 3-day stay at the hospital. First day is clean out, 2nd day she will be put under and scopes done as well as her g-tube removed and a tube inserted in it's place instead. This tube will monitor the upper part of the stomach/guts while another tube inserted into the bottom will measure things from that end. These tubes cannot be disturbed so she will not be allowed out of bed, for any reason, until the testing is done the following day. She will also not be allowed to eat or drink during this time and will only be kept hydrated via her CVL. On the final day she will be given a 30 minute time frame to eat so we can view what happens to her stomach/guts. The purpose of this test is to help us determine is it her brain not sending signals? Is her gut not getting them? Is the gut getting them but not able to do anything about it? Where is the break in the function. This can help us prevent her from having surgery to 'help' her GI system. We are at a loss as to how to help her as it stands now, there isn't anything more we can do here with the testing available and even on a less evasive scale.
She will be having sinus surgery done as well to try and stop these chronic sinus infections and facial pain. This will be on the 10th. She will be admitted due to how poorly she does with basic functions after the fact but Cincy Children's work way different than here, they don't believe in waking kids up and rushing the process of hurry up and get home. They let them wake up on their own and slowly and with Alana that helps, it gives her a chance to stabilize her body vs. the huge temperature spikes we see (92-105 degrees) as well as the tachy and bradycardia she has. I am very hopeful that this will result in improved tolerance to surgery.
There is so much more but I'll work on updating the rest of that this week.
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