Today was our follow up appointment at the paediatrician. Every time we are discharged from the hospital, we visit our paediatric within a week. Breanne came along, due to school being finished. It was nice to have company and great to spend time alone with her. Breanne is much like her mom when it comes to the medical world. The appointment always starts with a weight. I took off Jacob's outfit, just to find the tape had worked lose around the tube and it was just hanging there. NOT a pleasant finding. One little tug and out it would come. Poor Breanne had to get me the tape, (which I've learned never leaves the diaper bag for such occasions.) She instantly went white and very quiet. Once everything was taped good, and the nurse left, Breanne said, 'Oh, my toes were tingling.' Yep, that would have been me 20 years ago (and probably even just 1 1/2 years ago.) It's amazing what we can do when we have to.
I didn't come with a long list of questions for the doctor, unlike some other times! This time I had one main question. The question was 'whether large, bright yellow vomits are normal after receiving a GJ tube.' I'll save the rest of the details:) He didn't look too happy. He is hopeful that it is just his body adjusting to a different feeding method. Sometimes it takes kids several days for the body to figure things out. If it persists, we'll have to make another trek to the hospital. The doctor is worried about him dehydrating, if he keeps vomitting.
One thing that came as a surprise was that he lost weight again. He had been handling his feeds so well for the week before his GJ tube was put in. Since it's been in, he hasn't brought up any feed, so I presumed he'd at least remain at a stable weight. I was hopeful for a gain, even if it was a small one. We're waiting for a call from the enteral feeding team regarding our options. I'm so hopeful that the whole weight loss thing is just a feeding issue - not a neurological issue!!
Yesterday, our respite worker was here helping me out. I went to London to pick up a child's recliner chair. On the website, there were super cute ones. When Paul saw the camouflage one, he said that was the one we should order. I wasn't thrilled with his decision, yet I kept telling myself things could be way worse than not agreeing on a child's chair material:) When I actually saw the chair, I was pleasantly surprised. By the looks of Paul's expression when he saw it, it's here to stay. We have an appointment in July so the chair can have straps added to make it much safer for him.
|Jacob trying out his new chair. He isn't too sure!|