Thursday, May 13, 2010

Three Steps Forward, Two Steps Back



Today has been one of those days where I think crawling in a hole seems like a good option. It is rainy out today and we need the rain but I think it is contributing to my funk. Anna started running a high fever on Sunday and has been sick all week. We took her to the doctor but they aren't really sure what is wrong with her. The good news is that she is feeling better today and finally fever free so either the virus left or the antibiotics are working. I don't know which and quite frankly don't really care as long as she is well. In the course of her being sick she had some blood work done that showed her to be fairly anemic. She had blood work done about 2 months ago and there has been a fairly significant decline in her levels. Part of it may be due to being sick but the last labs were done while she was sick also so I don't think that has much to do with it. It is probably iron deficiency anemia but I am confused because her nutrition over the past month has been better than ever. The treatment for that is simple, give her iron, but adding iron to a kid who already has stomach problems and horrid constipation is not really going to be all that fun. She had more blood work done yesterday and we will see where to go from there. Just add it too the list since we didn't already have enough to deal with. On top of that it appears her balloon dilation was short lived. We knew that was a possibility but had hoped it would last 6-12 months like Dr. O had said. Instead we are back to square one with a kid who won't eat and who is vomiting up all of her tube feedings. She has already lost over a pound in 5 days. We had a GI appointment yesterday but it got cancelled and rescheduled for the 26th. Great! I plan on talking to Dr. O about whether Botox injections into the pyloric sphincter are an option or if we should just head straight back to the surgeon and have the pyloroplasty without the fundo. I do not regret the dilation because at least now we know what the problem is and that the fundo isn't necessary. I just regret that over $10,ooo that was spent on it and it only lasted less than a month. I am stressed about money today too. I know God will provide, that isn't it. We have money to pay our mortgage, for our cars, utilities, food, and that kind of stuff. What we don't have is the money to pay all of the medical bills we owe. I really really want to pay them. They provided a service and although my insurance paid a lot we are always left with a balance, a balance we cannot afford. The whole medicaid waiver program denied us because I was not able to get all of Anna's medical records together in what they considered a timely manner (try collecting them all in less than a week- impossible!) I guess I will collect them now and then reapply. I need some sleep. I have been up with Anna the past 4 nights and I think I am just worn out. I will get out of this funk. I think I can. I think I can...

2 comments:

  1. Poor Anna! It's awful when little ones are sick.

    Katie was also very low in Iron. The Enfamil drop upset her stomach and made her constipated. I did a ton of research and found a supplement called Floradix. It's Iron made from a more absorb-able source. You need WAY less than traditional iron and it's easy on the stomach and does not cause constipation. Katie's been on it for 3 months. We just had blood work done yesterday so I'll know soon how well it worked. We gave her 6mg/day broken into 2 doses compared to the usual 45 mg/day with Enfamil.

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  2. Thanks Kristine! They told us to get something called Fer-in-Sol which I think is the Enfamil kind. I will give it a shot. Please let me know how Katie's labs look becasue if they are better we might switch. Hope she is doing well!

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