I have been dragging my feet to update because everything is going so swimmingly here in the kingdom of Maisie the Great. She's been feeling great and doing really well in physical therapy. As always, however, the fun must end. We headed back to the hospital Monday night -- by the way, we have two regular hospitals: the emergency one in New Jersey which shall henceforth be known as the NJ children's hospital (not it's formal name) and the one in New York City where her more specialized care happens, referred to as the NYC pediatric specialty care or NYPSC or PediCare or something (again, not its formal name. I'm making these up for privacy reasons) -- so we headed down to the for two days of routine evaluations, follow-ups, and a formal sleep study, which her GP wanted done as a follow-up to one we did a year ago (sleeping, another thing I should give details on. I swear I will post a detailed explanation of her anxiety and sleep struggles soon.) So first stop was the sleep center at NYPSC, where she would stay overnight to do a polysomnogram while she sleeps. She was really scared when the nurses started sticking the sensors all over her. She had this done before and it was only a year ago, she had a bad case of pneumonia at the time and was already in the hospital when the GP had the realization that she might not be getting better because she wasn't sleeping well, so we did the sleep study and discovered that, yes, she was getting only about an hour of real sleep each night despite being in bed for hours. Anyway! The GP wanted to do a followup to the sleep study to make sure that the Melatonin and Lunesta were still doing their job. Then, this morning, she had renal tests and an electroretinogram done to test her eye function, which has been a major concern. Then we had lunch, and then this afternoon she had a long series of x-rays on her past trouble areas (ribs, hands, legs).
We were supposed to have a meeting with her major care providers and then either be sent home or schedule follow-ups. That didn't happen. Her renal tests came back so bad that the nephrologist thought her blood or urine might have been contaminated. And so they drew more blood and took another urine sample and while the results were better, they weren't enough better. She was placed in pediatric ICU on dialysis to clean her blood, which is apparently still full of creatinine (the crap that kidneys are supposed to filter out). Meanwhile, her doctors had a tense conversation out in the hall. The anxiety was palpable. Finally, the nephrologist looked at me with that looked that doctors have mastered so well, that look of poorly disguised fear. After three hours of dialysis they would test her blood again. If the creatinine levels were down enough, she would remain in the hospital overnight for observation, and then be tested again in the morning to see if she maintained healthy levels. But (of course there's a but) her levels weren't low enough. A nurse took her temperature and more blood and asked me a zillion questions about her seizures, her energy levels, her bowel movements, her skin color! At ten o'clock they took her in and took a kidney biopsy. Now we're waiting. It is almost 12:30 in the morning. Maisie woke up after the biopsy and fell promptly back to sleep. I have been told that I am free to fall asleep until they bring the biopsy results back, but I can't. I am freaking the fuck out. This was supposed to be a routine overnight stay, just a couple of quick tests to monitor her progress and suddenly this stifling PICU room is thick with panic, uncertainty. Jeff is on his way with clothes and toys and some other things. I'm trying to stay calm. I will update when we have news.
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