Back In

Yep back in the hospital. So, a lot has been going on since I last posted. Over the past month, Q has just kinda fallen into a very, very slow downhill spiral. First of all, we know Quinn has issues with her gut. they are typically on and off. She can have two very bad days motility-wise, in which her stomach is blowing up like a balloon and she's just off, and then go back to her baseline. We can sometimes have weeks of no bad days, but this past month, she had way more bad days than good days and it slowly caught up with her into what we are currently dealing with. She also is no longer fully potty trained. She's having so many accidents her in pants that there's just no point to putting her in panties anymore :( Sad thing is that she knows she had an accident and she will tell me and get all embarrassed, but she just doesn't seem to be able to control it anymore. ugh! it's frustrating because she's 5.5 years old.

So, last week, I started to notice that Q's tummy wasn't really going down. I took her to the pediatrician who also said that yes, she is distended, but she's acting totally fine. so we did an Xray and the next day the pedi called me to tell me that she needed to be seen at the hospital. Her liver was enlarged and her stomach was greatly distended with gas and fluid. So, since her doctors all think that she should be see at CHLA, where her mito doctor is, we thought that it would be a good idea to just go down there since I kinda knew where this was headed. It was a tough decision because she was still acting very normally and she was not spilling any ketones or anything like that. So, we drove all the way down there, which is about 2.5-3 hours away! we get in there and the docs thought she looked well. Mind you, i KNEW she looked well, but I also knew where she was headed. I gave them her histoyr and told them her pattern in this and that I thought it was a good idea to nip it in the butt before it got worse than what it is right now. The took another Xray, which also showed the same distension as the one from the day before, but they took all her blood and all her bloodwork was normal. Because her blood work was normal, they felt that I was doing fine with her at home and that there was nothing they could do for her that i couldn't or wasn't already at home and they sent us home, with a diagnosis of pseudoobstruction!!! I was shocked. Loma Linda would have admitted right away given her history and two consecutive Xrays indicating a pseudo obstruction. She was smiling and her labs were normal which is why they sent us home. I don't blame them, but I really thought that hospital was more familiar with how Mito kids were and that I shouldn't have to wait till it's an emergency to bring her in. Well, apparently i was wrong and totally wasted my time going out there. Not only that, but I KNEW where this was headed! I KNEW my child was entering the "danger zone" and just had a feeling that this wasn't the end of this fiasco.

So, I did my best to care for her at home over the weekend, checked her ketones, she was still doing remarkably well considering taht her stomach just kept blowing up like a balloon. She wasn't in very much pain at all, I could still hear bowel sounds. The problem was that I had her at 6 caps of mirilax a day, senna and generlac and had given her an enema and she was still getting bigger and bigger and she was not really pooping anything that I would consider an actual bowel movement. She had been excessively hungry and excessively thirsty. Her blood sugar for some reaosn was high. and she hadn't peed all of yesterday.

So, yesterday, I decided to take her to the local ER for another Xray and to tget their opinion. Due to how well she was doing, i was certain her labs weren't going to be abnormal. But when the ytook her Xray they were like... she really needs to go into the hospital. Her Xray, which was alreayd pretty bad had gotten significantly worse. They diagnosed her with a small bowel obstruction, which im certain is pseudo. She was also hypoglycemic and her heart rate was in the 140s.

So, we are decompressing her entire body. Draining her J, her G and her booty. I'll keep you guys updated. I think this will be a short stay. She is acting fine so I'm assuming we won't have to worry about any shennanigans she might want to pull while we are here.