It was 6th grade before anyone in my school ever saw me upset enough to cry.
I don't remember many movies that would make me cry growing up. Beaches?
When I had the Demon (at 28 weeks) I cried only once. I had been home just one day and received a phone call saying he was being rushed to Children's Hospital for emergency surgery. I remember jumping into the shower (I couldn't drive and had to wait for his dad to rush home) and just breaking down in the shower. After that, I just knew in my heart that he would be okay. I didn't worry.
Since then, I've been a little more emotional. Seeing ittie bittie babies on machines, watching certain shows, even certain news stories may upset me. But, I've never been the type to cry.
This morning... I cried.
The Demon's symptoms seem to be returning. We began tapering the Prednisone last Thursday. Tomorrow he is scheduled to taper another 5mg. Yesterday he had 5 trips to the bathroom. Five. As of 8:40 am this morning, he's gone three times. Today is going to be at least five trips by the time he is ready for bed. I just broke down by myself when I heard that toilet flush for the 3rd time.
Lame, huh?
I wish I knew what to do. I wish the decision, regarding the next steps of his treatment, was clear. I wish someone could just say...
"Do the Remicade and he'll be fine."
or
"He'll be so much happier after you remove his colon. It's safe and everything will work out for the best!"
Since his diagnosis, I've never had that gut feeling that he's going to be okay. It's so different when I compare it to when he was a baby going through all of his health issues. It scares me that I don't have the gut feeling.
Terrifies me.
That has to be so tough watching him suffer through that. Are his docs giving you any idea of what is best?
ReplyDeletehis doctors are definitely pushing the Remicade. But also throwing out that taking his colon out will "cure" him.
ReplyDeleteI know that Corinne has talked to ya and Crohns is different than UC,but I'd probably give the Remicade a shot..It really didnt help her alot but with UC its all Colon damage and Crohns its throughout the digestive tract and corinnes was mostly small intestine and ilium damage.Only thing with the whole surgery aspect is that its permanant,so you never know,the remicade may work wonders.
ReplyDeleteThank you Jeff. Talking with Corinne about everything was very helpful.
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