well, at least for me..not so much for Kevin. The new hospital is much better at being family friendly and Kevin did have a decent place to sleep in C's room. The lack of sleep comes mostly from C's eating schedule. Since she eats at 11:30pm and 5:30am there is not much time to get sleep in between. Usually I do the 11:30pm feeding and Kevin does 5:30am but with only one of us (Kevin) staying with her in the hospital overnight he got to do both feedings. He volunteered to stay with her because he is just sweet like that. Plus, he knows he can get by with less sleep than me. I will make it up to him tonight though and make sure he gets to sleep early!
C is doing fine. She was her usual self over night with eating. She is having a lot more pain than she had been because she has had to be off her reflux meds (prevacid and reglan) for several days in order to get an accurate ph probe. She cannot be taking meds to reduce the acid when they are trying to measure how much acid she produces. So she has been in pain which makes feeding her much more difficult than usual.
Poor Kevin was also here this morning when the GI doctor came by. When I spoke to Kevin shortly after that visit I could hear the frustration in his voice. I think he said the GI docs are useless. Not sure we would really go that far...but it is frustrating when one one hand you are being told you are doing everything with her feeding wrong but on the other hand to keep doing what we are doing because she looks good. So weird and very frustrating. Unfortunately, the GI docs get kind of a bad rap. Much of what they see and try to treat, like reflux, is not something that can be cured. They can give meds to help with symptoms but they cannot make it go away. Only time will help with that. This all leads to finding the right balance of meds, caloric intake and fluid volume intake in order to keep C growing like she should be. Right now C is not really taking in enough calories or fluid to keep up with what would be consistent in a normal baby much less the increased volume she needs because her heart is working harder than a normal baby's. Somehow, up to this point, she has still been gaining weight but we are in a danger area now. She is at the bottom of the growth charts now and she is in danger of falling off. Once her head shows no growth we have reached critical status. We are not quite there yet but we are doing all this to try and avoid getting to that point.
On the positive side, C does not have any damage to her interior from acid. She does not have an ulcer and her esophagus is not inf lammed. Not sure if that is from being on the reflux meds already but it is good that there is no damage. The biopsies along with the results from the ph probe will be able to tell us a little more info about the reflux. The biopsies will also tell us some other stuff like allergies, etc. (Please forgive me if I am repeating anything I said in yesterday's email...lack of food and hunger tend to make me loopy). The best part is that the ph probe comes out in about 15 mins and after that we can go home. Yea! She did not get put in the cvicu, just the regular floor so there is no one other than GI to get clearance from. If GI says we go home then we do. So, we are actually looking to be out of here soon and even better...be home soon.
Well, the nurse is here to start removing the probe and C is crying so I need to go. Thanks so much for all the support and prayers.
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