It seems that stubborn tube and the reason he still needs it is our biggest challenge.
Monday's trip to three different hospitals wound up with Trish and Dom staying the night at the Alberta Children's Hospital in Calgary. After that, early tests came up negative for illness, but he was still whining and woke up four times over night.
More tests were yet to come back so just in case they stayed a second night. Result? Yet another few rounds of bingo on Wednesday before he was discharged.
Even then, they were asked to stay in Calgary for one more night. Trish woke up on her birthday at her parents' place before driving home. His present was sleeping in with her.
One of the things they did change this week was to limit his fluid intake. Considering he's not eating much outside of crackers and spring rolls, we were initially thrilled when he gulped down orange juice by the cupful. But our doctor pointed out how many calories he's getting from the OJ, and that it's become a crutch. OK, he didn't call it a crutch, but I will.
Once you're on a feeding tube the key to get off it is to feel hungry enough during the day that you want to eat, but still get enough feed at night so that you're OK nutritionally and aren't losing too much weight. Now he'll only drink water and hopefully start building up his appetite.
This week was a reminder how far we are from normal. It was frustrating. We have to keep reminding ourselves how far he's come.