We’ve been pretty busy since October and are going to stay busy for the next two months. Jackson’s fourth hospital stay this year in August landed us with a referral to Pulmonology. I mistakenly thought the Pulmonology appointment wouldn’t lead to much. Instead, Jackson got the pneumovax shot and referrals for swallow study and a chest X-ray while healthy.
During the swallow study Jackson was seated in a chair positioned between an X-ray machine. The speech therapist put dye in his food and they took X-rays of his mouth and throat while I fed him to see if the food is going into his stomach or into his airway. His chair was positioned higher than his wheelchair so that they could get a good X-ray picture but, because of this, I had to stand on a stool to feed him. He also threw his head back while eating, which he normally doesn’t do.
He aspirated about 30% of the time during the study. We dispute he’s aspirating that much because he was in a different chair, I was in a different position while feeding him and he kept throwing his head back, which opened up his airway.
Regardless, the results of the swallow study led to a meeting with the feeding team and appointments for a fiber optic swallow study, a CT scan of his lungs, and a broncoscopy. He has to go under anesthesia for the broncoscopy.
Jackson’s hips are out of socket and he is going to have surgery in the coming months to put his hips back in socket. While we never expect him to walk, the hip displacement can cause chronic pain. So the hip surgery is necessary to keep him out of pain. After the surgery he will be in the hospital for about a week and he will be in a cast for about six weeks.
Josh and I have also decided to go forward with a g tube. Jackson does not eat well when he’s sick and he will need it after his hip surgery. Jackson has to lay flat while he’s in the hip cast and we can’t feed him by mouth if he’s laying down. This procedure will be scheduled after we have a date for the g tube surgery. We will spend one or two nights in the hospital after the g tube surgery.
The doctors can combine the g tube with the broncoscopy, thereby avoiding him going under anesthesia another time. This surgery hasn’t been scheduled yet but will most likely happen in January. We have an appointment with pediatric surgery this month to get the g tube and broncoscopy scheduled.
This summer, at the direction of his ophthalmologist, we started dilating Jackson’s right eye once a week to strengthen his left eye because he was only using his right eye to see. The dilation thankfully worked and he is using both eyes to see now. In addition to the dilation, we’ve been dealing with a nasty eye stye. Something about the oil on his eyes not clearing causes him to get eye styes. Again at the recommendation of his ophthalmologist, Jackson is now taking one teaspoon of fish oil per day. The fish oil is supposed to help clear out the bad oil. I purchased mango peach flavored fish oil from Amazon. It’s peach in color and doesn’t taste all that bad but grosses me out when I think about fish oil being mango peach flavored.
So, we’ve been busy. It’s been a little overwhelming at times but I keep reminding myself that we are doing all of this to keep him healthy.