I took Braedon back to Children's Hospital today to meet with the GI team. They came in and evaluated him, took a diaper sample from this morning and left the room for nearly 45 minutes. When they came back, they sat down, looked at me and said, "We have no idea what is wrong with your son." What horribly frustrating words to hear but comforting at the same time. I was so happy that they weren't trying to lie to me and comfortable telling me the truth. It was so frustrating that there still, is no idea.
What do we know?
Well, we know that he is still having blood in his diapers. The stool samples taken in the hospital came back clear for bacterial growth and infection. We know that his weight right now puts him in the 35% for his age where as in February he was in the 68% and at birth was 98%. That is not good. We know that something is wrong and thankfully the GI doctors still have some ideas up their sleeves while we are waiting for the mitocondrial tests to come back.
I expressed my concerns over the fact that no one knows anything and he is 18 months next week. I expressed that I have started doing research on my own in an effort to advocate and help search possible conditions. Instead of being brushed off, Dr S sat down, stopped what he was doing and asked me what I thought it could be.
I told him I was concerned about the autoimmune disorders since we know some are on both sides of the family. They have only tested one and there are atleast 5 or 6 more that I researched. He agreed and had that on his list. We both suggested Cystic Fibrosis, I have thought about that for a while and he actually brought it up so we are doing a sweat test next Thursday.
He said there are a few other things he would like to consider but would like to get the sweat test done and some more allergy tests done that he said were not normal allergies (I am wondering if it has to do with antibodies we carry and how some people actually have an allergy to them; it is part of the auto immune diseases).
So, we don't know any more and no less. They have put him on zinc, probiotics and more erythromicin to see if we can boost his weight again and the antibiotic to help wtih the digestion problems. He has been getting worse again the last two days and I have wonder/fear what tomorrow may bring just by the way his diapers have looked today. We will see, I am praying everything is fine and he remains comfortable. He has not been sleeping much at all and that has us both tired and moody.
I hope this helps, I am trying to keep everyone updated as soon as I can. I have been a little overwhelmed keeping up with him and Caileigh's last week of kindergarten that the house has suffered and so has my correspondence in how Braedon is doing. If anyone has any questions or hasn't heard from me, please give me a call or email me with your questions.
Tomorrow I have some absolutely beautiful pictures to post of our kiddos. A friend of ours took them back in February and it took a bit to get them due to prior commitments (which was no problem at all) so I am just now getting around to uploading them. Check back tomorrow for some very beautiful and colorful pictures of our babies. :)