Day one of our stay in Children’s Hospital of Wisconsin is in the books. C fell asleep a few minutes ago while playing a game on his iPhone (side note – yes, he has his own iPhone only because it’s my old one and, no, it doesn’t have cell service on it.)
He’s doing well, but exhausted. Today was a tough day for him. He woke up at 5:20am and only consumed one graham cracker and a few gummy bears until this evening when he ate a sugar cookie. He had his first tube feeding around 7:00pm with 4 ounces of pediasure. At 8:30pm he ate a bunch of french fries and 1/4 of a chocolate chip cookie that we had ordered for him from the cafeteria.
There’s a play room on our floor of the hospital, and C absolutely loves it. He found the trucks, cars and tractors right away and enjoyed playing with them. We spent nearly every moment in the play room when he wasn’t being medically attended to.
The feeding tube insertion is right up there on my list of least favorite things ever. Despite being wrapped tightly in a blanket, he fought so hard that he freed his hands and Hubster and I had to pin him down for the nurses. He cried hard, and continued to cry for a while after. It was very difficult to handle.
I have to admit that I’m somewhat grateful that the Zoloft that I’ve been taking for PPD leaves me emotionally flat. I have no tears and perhaps that’s a good thing right now. It makes me focused solely on one task at a time, completely level-headed without much emotion. It’s quite strange to be incapable of tears, even when your child is writhing in front of you. It’s not that I’m lacking compassion, but I’m incapable of feeling the pain. Odd.
We will be here at least through Monday. There are some specialists that they want him to see that day. I’m not sure I even recall which specialists. Today was a bit of a whirlwind. I do think that a speech therapist was mentioned, as well as a dietitian. He will not be seen in the feeding clinic until his October 30th appointment, unless there is a cancellation and he can get in sooner. They will be putting together an action plan to keep him stable until that appointment. His GI doctor does not want to perform the endoscopy at this point because he isn’t stable.
What they’re concerned about is “refeeding syndrome,” when someone has gone without proper nutrition for a prolonged amount of time and suddenly begins to eat, they’re at risk for imbalances in various blood levels including electrolytes. They will be taking labs from C twice per day to check his levels. At this point, we are unsure if we will be going home with his feeding tube still attached.
I’m just praying that he doesn’t pull out his feeding tube during the night…
More tomorrow. Thank you all so very much for your love, prayers, thoughts and support. It is appreciated more than I could say.