So, we are still in the hospital. Quinn is still not really tolerating her feeds, however she's getting there i think. she's doing a lot better. The type of reaction she was having was very scary, but we have given her some more pain meds and a muscle relaxer or antispasm or maybe it's the same.. and that is like... the magic pill! She's no longer having the same reaction to the feeds, however she is still having a little bit of pain and some very obvious distension. She becomes distended in like a lumpy type fashion... these lumps are the areas that her motility tends to be a bit sluggish. It's rather frustrating... and she is very consistently having distension and pain on the side of her stomach that her J tube is. She is still on 5ml/hr of 1/2 strength Vivoenx and pedialyte and she does well for a number of hours, but then things start accumulating and she starts complaining of pain again.
Yesterday... i think it was... the doc was telling me that we could go home on TPN if the nurses would come train me and i said... ummmm.... no.... i don't think that's a good idea. See, i believe that Quinn CAN come home on feeds, we just need to find the right combination of meds and a tolerable rate for her. Yes, i do know that we aren't near that just yet, but I was being hopeful. After today, I'm less than hopeful since she is still accumulating the feeds, however, we have yet to get the new tube placed and I am really hoping that could be just what she needs. I just want to avoid home TPN for as long as possible. I know she has mitochondrial disease and I understand what this means ith her stomach and where this is going, but my kid still has bowel sounds (not always and sometimes they are far from active) but they are still there most of the time. TPN scares the living crap out of me. and i just don't think I can handle the extra stresses of it. When Monday rolls around, and we haven't gotten farther than where we are right now, i might rethink the home TPN thing, but i'd much rather keep pushing.
Yesterday was a terrible day for me... not for Quinn, she had a good day, but we had an awful nurse who did not listen to my concerns and was just totally clueless on how to properly care for Quinn! I was so aggravated by her. Eventually, she made me so pissed and as I was taking Quinn for a walk, I bumped into Quinn's GI doc, this surprised me and he could see that I was visibly quite upset and so he asked me what as going on... and that's all it took to overflow the dam! I was leaking FAUCETS out of my eyes and was just so stressed out and frustrated and I just couldn't take it anymore. I was literally a sobbing mess, trying to explain to him what had happened! What a great doctor lol! He totally understood! And today we had a discussion about what took place and why I was so upset. And rightfully so! Basically what had happened is : after an already very stressful day with her and her getting mad at me because she needed an order for EVERYTHING! even when all the other nurses were doing the RIGHT things the day before and her basically arguing with me over every little detail of Quinn's care... I told her to stop pushing oral feeds into her stomach (cuz she felt that Quinn should be eating and drinking... yes a kid who has a J tube should be taking stuff by mouth into her stomach... hmmm)... she was pushing more stuff into her stomach and I told her that I thought she should stop pushing stuff into her tummy because she was obviously distended and she looks at me and says... what are you talking about mom, she's not distended and she starts pushing on Quinn's stomach and Quinn's wincing in pain. And she walked out the room. WOW!! HOW COULD YOU POSSIBLY BE THIS BLIND!!! So i grabbed the camera and took pictures of Quinn's stomach (which I will post here when we get home) and my roommates were there through all this too (who were also having issues with this one nurse) and they also couldn't believe she said that. OBVIOUSLY, SHE WAS DISTENDED!!! So anyway, long story short, she felt like i was being ridiculous, that my child (who was seriously doubled over in pain and crying and laying on my lap) was not in any true pain and that's what really set me off, so obviously, i'm pissed and walking out and the first person who happened to ask me what as wrong was her GI doctor and that just threw me over the edge and i couldn't hold it in anymore. I think i cried for a good 30 minutes on the phone with my mom. Thankfully, today has been a MUCH better day. Yes, i did complain to this nurse's boss.
Yesterday also, she had a blood pressure of 60/40 and she needed 2 IV boluses to get her up to her norm. (she tends to run low anything over 80/40 is acceptible for Quinn). She is also having very fluctuating temps requring either heating pads or clothes off... however most have been normal and i'm certain this is due to dysautonomia.
Please pray that we can get Quinn's Vivonex up to a tolerable rate. If this doesn't work out, we will be discussing home TPN on monday as we really just need to get home or Quinn and I won't have a place to live much longer.
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