Thursday, July 28, 2011

No news is news

We are just playing a waiting game right now with Zach, and I am not a patient person so this is just driving me crazy. He had bloodwork done last week to check his tryptase level for mastocytosis, and also to check for VIP tumors and then on Monday, I turned in a 24 hour collection of urine (which was a feat in itself) to check the histamine for the neuroendocrine tumors. No news yet on any test results. The GI doc we have been seeing lately wanted a referrel for Zach to UNC childrens for a "fresh set of eyes" on his situation but the appointment isn't until Nov 23! Which in my book is just unexceptable. There is no way he can wait that long, he is still losing weight and having all of these issues.
At this point, I am so frustrated with the whole hospital situation. It seems like they think he will just magically be better one day...which would be wonderful but its been 2 1/2 years now and he is worse now than he was. When things started getting bad last year, it was supposed to be pull foods/use NG tube for formula only for a month until patch testing and then add foods back. Well, that went to being allergic to all the foods to having a G tube surgery to delayed gastric emptying, then having a roux en y J tube surgery to central line. What?! It has been a crazy year...yes, this all happened in one year.
Oh, not to mention the whole doctors suspecting us, his parents of making him sick....why would I do that to my son. Thankfully, Zach has the best pediatrician in the world who stands up for him/me and put an end to that really quick. But we did have a hospital stay with a "sitter" for 24 hours so they could see the symptoms Zach was having. Fine...did you like the 6 times he woke up screaming in pain and did you like the hour where he vomited 10 times???? So there, my sons symptoms are real.
I am rambling but hope that everyone can understand how frustrated we are. My son is sick, really sick and yet we can't get anyone to diagnose him or treat the symptoms he has. He wants to be normal...he would love just one day of running around without having to wear a 10 lb backpack on his little 24 lb frame. And he would love to just go outside and play but he overheats within minutes of being outside. Maybe one day he will be able to do the normal things. Until then we just pray and hope.
Monday we go back to the dr. and we will hopefully make a plan, get some answers or something.

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