Well, feeds are not going as planned. Every single time we try to feed her, she gets very uncomfortable and becomes in a lot of pain. Even on just 5ml/hr she becomes very sick: pale, lethargic, nauseous, her hr climbs, her breathing gets wonky, her o2 sats drop, and it's all written on her eyes. She looks very visibly sick. I am not comfortable wit hthis reaction. After about 30 minutes of her crying and begging me to stop feeding her, we just have to turn the feed off. The reaction she is having to the feeds is very strange to me, especially considering that she's in pain off just a few drips into her stomach. and the symptoms leads me to believe that this might be autonomic in nature.
Quinn's surgeon won't be on till friday and her GI doc wants to talk to him about placing a special jejunostomy tube into her J stoma to sort of bypass some of the intestines that are definitely not working well and are causing a significant amount of pain. the new tube however won't get here until Monday and if she is not tolerating feeds, she will have to go home on tpn. Well, her reaction to being fed is a bit scary considering that it LOOKS like she is having the same symptoms that she had when she got very sick in November. So in other words, i just don't feel comfortable taking her home with those kind of symptoms. Also, we spoke with her GI doc a lot about Quinn's overall care plan and he just really thinks she needs to be seen at CHLA, where her specialists are.. I have more to that story... but in short, i think he's feeling defeated and her issues are no longer GI issues, they are due to her mitochondrial disease and he is unsure of how to treat her properly. He's a great doc and he was totally honest with me and he's doing his very best and i know he is. We really like him a lot. But I think we might need to be transferred out to CHLA so she can be treated by the specialists and if today goes just the same as yesterday, I will ask for the transfer and i don't think i will get any resistance.
It just sucks. Anyway, that was the quick update.
1 comment:
Wow. Our lives are THE SAME right now. Emily is not tolerating anything through the gj-tube so we pulled it and went back to the g-tube. Not tolerating anything there, so on TPN. Now not even tolerating medications through the g-tube, and everyone here at CHOC is stumped. I just told my husband last night that I was going to ask about a transfer to CHLA, for a second opinion on both GI and metabolic/mito.
It is so hard to watch our little ones this sick over something so basic. Feeding is such a basic thing, and they don't handle it. It's heart-breaking.
I wish we were in the same hospital so we could commiserate in person!
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