I'm not thrilled with the information I was given upon discharge - I don't feel totally equipped to handle Julia's weight restoration at home, as she refuses to eat and I'm unable to encourage her cooperation. That said, we wanted her home with us. She gained 3 pounds in 12 days and also became more independent and got a better sense of portion sizes and the desperation of her situation. If nothing else, this might become our "carrot." ("Please eat one more bite - we don't want to see you back in the hospital.").
An example of how thoughtful my daughter is (having autism does not mean they have no empathy, don't buy that stereotype): she has been texting to check in with her new friend there. She's 15 and allowed to use her phone when her parents visit. Julia said the girl cried a lot when she was first admitted but Julia prayed with her and hung out with her to cheer her up. Since we have been home she has prayed for this girl everyday - and the other patients she met there. She even has all their names memorized so she can pray for them by name.
I was up with him most of the night. Despite being sick and tired he was in too much pain to sleep. He picked up some kind of virus/stomach bug - Taylor was feeling sick too. Not terribly warm but tummy ache for sure. Dean had at least a dozen liquid stools in 24 hours - with blood and that icky "somethings-not-right" smell. It is times like this I wish he was potty trained...
This usually active, high-energy boy was laying totally still for hours, awake but without any entertainment. That's how you know he's sick! He kept waking up to scream "no, no, no" over and over. I couldn't console him or get him to snap out of his trance. Sadly, this happens often but I have no clue what it means. Is he in pain every time he does this? It's obvious he is today.
Tuesday evening I brought him up to Children's Hospital because he had refused to eat or drink since Monday morning but kept having bad pull-ups. He actually did well during the x-rays and ultrasound (proving he's too sick to argue) but we ended up needing nitrous gas to put in his IV. I expected he'd get IVs for dehydration, I didn't plan on staying the night. Fantastic, I now have 2 children in 2 different hospitals plus 2 more at home that are sick. May not have been the best day to forget to eat.
Wednesday we got some blocks to borrow while in the hospital, he was far less dehydrated, and his fever - 103.6 when we arrived Tuesday - was down to 100.something! He was feeling much better and we had a great time playing with the toys and coloring. I spent the night in his bed with him and honestly really enjoyed snuggling with Dean one-on-one. Knowing he would be okay made it possible to relax and be present in the moment.
We've been living in crisis-survival-mode for soooo long now (at the very least it began almost 2 years ago when I was about 5 weeks pregnant with Bruce - I have difficult pregnancies) that multi-tasking-stressed-out-overwhelmed-sleep-deprived-madness is my default setting. Having nothing to "work on" except playing with my son (and my iPhone) was a welcome change.
Sure, I had to make a zillion phone calls (cancel preschool, the bus, PCAs, therapies, other appointments, etc) and manage my household from the hospital, but I spent time just sitting. It may have been hospital food but not having to clean it up and do dishes transformed meals into a 4-star-dining experience!