Issue 54: Ways to Survive ASD Parenting and Stay Thankful
Issue 58: Winning Ways to Share the Love with All of Your Children
Issue 81: When Special Education Fails to Be Special
I know, it doesn't sound like a day in the hospital. But today wasn't an average day here for Jerry. And that was a good thing. There were no tests, no needles, no x-rays. He woke up in a good mood and full of more energy than he has had in days.
After two games of Minions Life (his new favorite), we went down to the playroom where the Child Life team put together a scavenger hunt for him. He had to find 9 animals they hid all over the room. Child Life's whole job is to make hospital stays for the kids here as non-scary and fun as possible. They have even come in to explain in detail and using words Jerry can understand some of the procedures he has had to undergo. Here he is looking through shelves of toys during his scavenger hunt.
Then we headed back to the room for puzzles and Lego set building. His friend Hayden came bearing gifts of new socks and undies, some soft PJ bottoms, and Uno and Memory. After giggling through a game of Dr. Seuss Memory and building some more Legos, Hayden left and Child Life came back up to take Jerry to an activity time in the main lobby of the children's hospital. An hour and a half later, Jerry came back with some crafts he was quite proud of.
Sammy came then to build more Legos with him. And he is getting around very independently now as well. They still have a fall risk bracelet on him, but today he was quite the traveler, preferring the hallways and playroom to the four walls of his room. Here he is sporting his new accessories. He was dancing around impatiently waiting for Child Life to come and get him so it looks like he only has one leg!
Medically, he seems to be doing better too, though the progress will be slow-going. He did throw up again last night and became nauseous twice this morning. They still have him on scheduled doses of Zofran to help with that. We have been at the hospital one week today, and it has been that long since Jerry has eaten anything by mouth...7 days. They are now giving him all of his medications via his feeding tube because just taking those with a half cup of orange juice has made him very sick to his stomach.
The feeding tube and PICC line will continue to be his main food and nutrient sources for the next few days until he puts on a few pounds and then they can begin re-introducing food by mouth ever so slowly.
He cannot have any baths with the PICC line in. A nurse brings him heated antibacterial wipes once a day to wipe him down with. They are special wipes just for people with PICC lines in and form a barrier between his skin and bacteria since the PICC line goes straight into his heart and it is important to keep what surrounds it as sterile as possible.
The GI was in today to say that all of Jerry's biopsies were normal. They are just waiting on the sucrose and lactose enzyme test results. Again, it looks like it will remain a mystery as to why he lost all of the weight he did in the first place to cause the SMA Syndrome.
The doctor did say that she hoped we'd be going home by the end of this next week. We are praying that is the case. Thankful for everyone who has visited, brought him things to occupy his time here and play games with him, and for the meals delivered to the other kids at home. Next week, his ABA who comes to the house for his behavioral therapy each week, will come to the hospital to help fill in some gaps of time for him as well.
Thanks for the continued prayers! Keep 'em coming!
I am a Christian. I am a wife. I am a mom. I am an author. In that order.