[Mito} A whine and a GRRR!

[Guest guest]

Hi all,

I guess it's vent time for me. What a day! Last week, the surgeon put in a too small and too tight MicKey Button in place of Asher's G-tube. We had some bleeding in it this weekend and our ped gastro (whom I love!) told us it was too small and too tight (which of course was denied by the surgeon) and ran the risk of creating an ulcer. Our ped gastro said that he has been woken up in the middle of the night by emergency b/c of kids vomiting blood b/c of too tight buttons. So... b/c of insurance concerns, he had us go through the ER today to get it changed. I'm never thrilled with hospitals but the ER is probably my least favorite place to be. And, while we were there, the ER doc listened to Asher's lungs and ended up ordering a chest x-ray to rule out pneumonia. Ash did not have pneumonia but some other viral thing that is now requiring nebulizer treatments, etc. I felt so bad that I hadn't picked up on his wheezing! My older son, b/c of his primary immune deficiency, usually gets so much sicker (with high fevers, green gunk, etc.) than Asher was that I just didn't worry about his cough. Anyhow, to make matters worse, while I was at the ER, I received a phone message from Dr. S's office letting me know that Asher's tests will not be finished until late next week and then it will be more time until the report is written. I had been told last week that all of Asher's tests were finished but, apparently, Dr. S's employee was incorrect and it won't be for another week and a half. GRRRRR!

I struggle with feeling guilty again for whining and being angry b/c I know we could be worse off. Asher has gained almost 2 pounds!!! Yea! Although he is really almost totally fed by liquid. He continues to look pretty strong compared to before his G-tube. But, I'm just tired, tired, tired of spending my days and weeks at the hospital or in doctor's office. I hate to say this - but the brain drain of waiting in waiting rooms is getting to me!!! And I feel so much tension when I think Dr. S's report is going to be here soon and then it gets delayed. I go all over the place in my head at night - from being afraid of what his diagnosis is going to be all the way to being scared he won't be able to find what's going on with my son.

I've had a few good tantrums (in private) and it might be time for another one. Thanks for listening to this again!

Anne R