The concern about her heart is gone. Amazing. We did an echo the day after Dr. Rao came and talked to us, he came back and said her echo showed no sign of pulmonary hypertension! I was so happy. I spent the night before devastated because I thought her heart was now going to be such an issue and affect so many things and I am so grateful I don't have to worry about it at this point.
She got her GJ tube replaced twice since it was first put in last Friday. We had such a nightmare with two of them that we had to go up a size on the 3rd go round and it's worked. It does leak a bit when both the g tube and the j tube are clamped, but nothing compared to the green bilious that was pouring out before.
Ruby was also projectile vomiting this green bilious. It was SLIGHTLY alarming. It turns out that her body produces too much right now and doesn't seem to empty completely. So while her tummy was filling with food (when she was g tube fed) it was formula coming up, but now that her food is going into the small intestine, it's filling with just bilious, which is still upsetting to her system. Therefore, she'd have massive spit ups. I was so paranoid that she'd aspirated and we'd get bacterial pneumonia again before even getting out of the hospital.
We started to "vent" her tube or drain it. So she is being fed with the j tube, the g tube, from the same port is hooked up to a different tube that drains into a diaper that is tightly wrapped around it. It's a little crazy how much drainage is in there, that has nothing to do with the food she's getting. She seems to be putting out too much, therefore her weight and nutrition is a concern. The other night her heart rate went up quite a bit (170's. She's normally around 115) and she got a slight fever. I panicked. I thought," please don't let this whole process start over again." That was why we went to the hospital before...because of her high heart rate (200's) and her little body gave out. I had horrible flashbacks and couldn't get take my eyes off the heart rate monitor. Turns out she was dehydrated because she's draining too much from her tummy. They don't know why this happens but give the answer that every child has a different reaction to the GJ tube. So they gave her IV fluids to conpensate, which immediately brought her fever down and her heart rate down. They also discovered that if they compensate her nutrition by adding pediatyle in the amount she outputs from her tummy, she'll stay hydrated without relying on IV's of fluids. Which means we can do all of this at home. Not that I want to. The thought of having a drainage tube hanging from her all the time, is less than ideal. I had a whole pity party last night and was bawling that I can't possibly take on any more when I get home. But just like everything else...it's learning step by step. It's not going to be easy to take her anywhere with a feeding pump and a drainage tube and 3 other kids, one of which doesn't want to hold your hand in the street or parking lot because he thinks he is big. But I can do hard things and I can figure it out...maybe crying intermittently, but I can do it.
I watched this talk and loved it, but honestly thought, "why the heck does my burden have to be SO heavy?" I know, lots of people have it harder. But I sometimes don't think I can possibly handle any more.
But as my Dad reminded me...3 weeks ago I was pleading for her life. Begging and pleading. Prayers have been answered and now she's back and happy. I am thankful she's back. I can and will do anything for my dear Ruby girl...even if it's hard and I am feeling weak.
Great news Court! I LOVED the photon of her fist pumping!! #cutiepatootie
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