Thursday, May 30, 2013

Definite bad day

 Reagan spent most of the night awake and crying! Our night nurse was here (and holding Reagan most of the night), but I still got up several times to check on her. Then this morning she seemed like she might be turning a corner. She laughed for Daddy and then she was pretty quiet. I called GI and made an appt just in case. She had OT and speech and all went well. And then, the crying returned with a vengeance! We took her in for her appt and the doctor listened to her stomach...which sounded fine. Then he ordered an abdominal x-ray. She slept through it all and then we went back up and spoke with the doctor again. He reviewed her x-ray and was a little concerned with how her j-tube looked (it resembled a candy cane down the right side of her belly...apparently it should zig zag across her abdomen instead of going straight down one side). He thought maybe she had malrotation of her intestines, but then looked back at an old upper GI study she had done when she was a baby saying her anatomy was normal, so he said that couldn't be the issue. He did say (and I could clearly see) that she had a lot of air throughout her intestines (and this could be what is causing her pain). There is not much we can do about that. And from what I have seen, it seems to be a fairly common finding in kids with mito. So our issue is what do we do about her formula. Obviously she was doing MUCH better on the 20kcal/oz formula (and when we increased the calories, we saw worse and more frequent bad days)...but she was steadily losing weight on it! So now we are going to try giving her the regularly made formula at 20kcal/oz but adding Duocal to it to try to increase the calories. We're starting slow...just bringing it up to 24.5kcal/oz...so we'll see. We need to get her to an amount where she won't lose anymore weight (she's back up to 41 lbs). Not sure why the Duocal calories would work better than the formula calories, but it's worth a shot. Please keep it in your prayers that we can find something to work for our sweet girl! She was really miserable again tonight. Praying that she can get some sleep and wake up feeling better in the morning!   




video
Just a glimpse of the misery my girl goes through on a day like this (she was crying even harder tonight)...

3 comments:

Diane said...

well on a positive the Gi saw at least a little of what she has to deal with on her bad days.. and at least something new to try- so sorry this is happening.. I know how my heart breaks even now with Abby all grown when I know she is in pain and I cannot help her- that poor baby- big hugs! And hoping the changes will sooth and reduce the gas and the pain.

the grandma said...

OMG! This breaks my heart! I want to just jump in my car, drive over there, snatch her up and make all the "BAD" go away!!!!!

charity said...

that video just broke my heart. poor reagan i hope you can figure something to help her poor girly girl