Things are going a little better today. Kendall looks so much better and sounds better too. I gave her a bath and brought her wheelchair up. That seems to have made all the difference.
Thankfully we ended up being floored instead of the ICU because her breathing was better after the treatment and steroid. Yes steroid. It was our only option. So, we're back in the game of making certain her blood sugar is controlled extra tightly. So far so good....
The anesthesiologist from yesterday came by this morning to check in and apologize. She ended up intubating Kendall with a tube that was too small and had to do it again with a bigger one. Under normal circumstances, she would have immediately given her a steroid, but because of her Diabetes and issues, she decided not to. Kendall did look and sound fine when we left yesterday. She said we definitely did the right thing by rushing back. And going forward, she will always need to go inpatient when having any surgery.
Unfortunately, this hospital experience has been pretty crappy. I just finished giving the patient advocate an earful. Again. Mostly Ketogenic Diet stuff. Like I said before, we started this diet in this hospital. I don't understand why they can't just do like a quick class explaining how serious and strict this diet needs to be for kids like Kendall. I always feel like they look at me as the "crazy mom" who's so uptight. But Kendall wouldn't be seizure free if I wasn't so, I'm not apologizing for that! And the fact they don't have her food, or insulin is just ridiculous. They should be prepared for unexpected Keto Kid stays all the time if they initiate the diet at this hospital. Oh, and no brand name seizure meeds, which of course is a no-no for kids who are as fragile with their seizures as Kendall. Especially her Keppra. I certainly don't have a problem going home and getting it, but when you haven't slept in 2 days, that's really the last thing you want to keep doing. But I did this morning, leaving my dad here alone with Kendall. Thank God my dad stayed here with us last night. An extra set of hands with Kendall in the hospital is completely necessary. So I ran home to grab a day full of formula and brand name Keppra. Also to refill on diabetic supplies. Even the basic stuff they can't seem to locate...grrrr. But as I was gone, the nurse came in to prep Kendall for a blood draw. They numbed her arm with stuff (which by the way isn't Keto approved) and my dad asked what they were doing. She said taking blood. My dad asked why and discovered she was drawing from the wrong patient. Seriously. I know we're only human. But it puts a mom in a sticky spot when she has to leave to go get things the hospital should have and isn't there to watch every move made. So wish I could be in two places at once, but I can't. So what do you do!?
Bottom line, she's going to be fine. Hopefully we will be going home soon. We learned valuable lessons again. This new button is fantastic, and her site is already looking a hundred times better. The muscle biopsy is bruised quite a bit, but she isn't in pain. We haven't given her pain meeds since last night, so I think she's doing fine.
Thanks for all the prayers, e-mails, texts, and phone calls to let us know you're thinking about us :)
1 week ago