The trip to UCLA children's hospital ended up doing us very little good outside of ruling OUT a ton of things. They ran tons of tests and came out with nothing to show for it. They did however find that she eats way to little and decided to insert a feeding tube through her nose and it was awful but needed. So at the end of the week that we stayed there, I left with the same answers I came with and an NG tube in E's nose. They set up a visiting nurse for her and I was finally able to get her a pediatrician out in town to start following her progress through. The NG has not been going well for us and they have her eating a significantly large amount through it. She is throwing up and crying all the time. So, when the tube came out last night, I didn't seek out to have it put back and instead went and saw her new pediatrician. I think he is going to find the best way to get her healthy. He showed me today her growth curve and it looked pretty stuck in the same place on the length and weight combined, but once I saw the weight alone, it was very bad. She literally has dropped to almost -10% and it has been a steady drop for quite some time. What is so frustrating is that as soon as we left the hospital and she was no longer on the i.v. fluids, her weight dropped right back down to where it had been when we arrived. So, I am just lost. They say they can't find anything wrong with her and I see a baby that refuses to nourish herself so severely that she is just not growing or developing like she should. I know that it is a little confusing for people because when they see her they think she looks great- for a six month old maybe. But then I tell them her age and that changes real quick. AHHH!!! I just want to pull my hair out. I either want answers or for her to just improve and to put this all behind us. The pictures are of her at the hospital when they were running an EEG and just with her tube in. Take care...
3 comments:
I hope the doctors figure out soon what's going on so they can fix it. Poor little girl! We'll pray for her.
Oh, have they checked her for things like scystic fibrosis, or whether it's something as simple as not being able to digest fats? I have a friend who's baby wasn't growing and they checked him cystic fibrosis but it was just that he couldn't digest fat. That's fixable and he's fine now.
They actually tested her stool and her blood and found that she is digesting everything fine and that she is emptying her stomache fine also. What happened today though is that her specialist and I talked more over her history and he said it is looking more and more like a neurological problem because of her behavior at birth. We are going to hold off on anything extreme and try to give her a chance over the next month or two to improve on her own. If she doesn't, they will do a surgery to put in a tube to her stomache to get more nurtition in when she won't eat. We are getting there I hope!
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