Tuesday marked another day spent at Children’s Hospital of Wisconsin. We started the morning in ENT, where we discussed the neck x-ray that had revealed enlarged tonsils and adenoids. The second appointment involved a GI nurse burning off granulation tissue around C’s g-tube. He’s been through that process more times than I can remember but, as you might imagine, having your skin burned off is highly unpleasant. I’m pretty sure every child in the waiting room was thinking, “DON’T TAKE ME IN THERE!” Our day ended with the feeding team psychologist. We were given more suggestions and tips about how to encourage C’s exploration of different varieties of food.
It looks like C will not require surgery to remove his tonsils and adenoids! I’m relieved that he won’t need another surgery. However, we do have a bunch of new appointments coming up.
I expressed concern about C’s terrible sleeping habits. He hasn’t slept well since birth. In fact, I think there are about 5-10 times he’s slept through the night. Ever. He is 2.5 years old. (Have I mentioned I’m exhausted?) I often hear him coughing at night and he wakes up a lot. I think that he was even sleepwalking this week, because his door was inexplicably open in the middle of the night. Apparently, coughing can be a symptom of asthma in toddlers; so we were referred to the asthma and allergy clinic.
We will also be having a sleep study done in mid-January to get insight into his sleeping patterns. Next week, he will be getting a swallow study done to make sure his tonsils are not impeding his ability to eat. The ENT does not think they are, but they want to be thorough considering C’s extensive feeding problems.
My heart just broke for my son over and over again. As we approached Children’s Hospital, he said, “Go to the doctor!” He shouldn’t recognize the hospital. When we got out of our car in the parking garage, he said, “I go in elevator!” He shouldn’t know that we take the elevator to the skywalk. When we were waiting in the room for the GI nurse, he said, “Ouch, tube.” He shouldn’t have a tube in his stomach. When we picked up his new prescriptions at the pharmacy, he said, “I get medicine!” He shouldn’t get medicine multiple times each day.
My heart breaks.