If you didn’t catch the first part, read it first.
We were waiting for many months for a call from Kennedy Krieger’s Outpatient Feeding Program. It’s not something I had mentioned previously; I wasn’t sure how helpful it would be. When the call finally came we were so excited. There was, however, a massive “but.” Our son had begun struggling with a new medical issue, ITP (Idiopathic Thrombocytic Purpora), and we weren’t sure how well he would do in the outpatient program given the need for weekly blood draws and hematologist visits. After speaking with the program’s nurse we concluded that, while difficult, managing his care on an outpatient basis was possible. If we were already actively in the outpatient program and he needed to be transitioned to inpatient they would do their best to have us transitioned to inpatient as quickly as possible.
As many of you with complex children probably already know, possible isn’t a reassuring word. In this case, possible meant that we could walk over a mile through an underground tunnel, up an elevator, through the main Hopkins Hospital building, across the sky bridge, down the elevator in the garage to the bottom level, through the garage, into the Rubenstein Clinic, and sign in to the clinic’s outpatient blood draw center. You might be wondering, “can’t KKI (Kennedy Krieger Institute) draw blood? They have an inpatient program!” They can only do blood draws for your child if your child is in their inpatient program. We were not. Take a quick guess on how long this lasted before you continue, just for fun.
A week, it lasted a week. Frankly, it didn’t end up like I expected. The whole situation fell apart in such fantastical fashion even I would have had difficulty believing what was going to transpire if you had told me in advance. Have I mentioned that I was doing all of this while pregnant? I was totally pregnant.
We had the first blood draw completed and the results were good. We powered through the first week like champs. That weekend our son began to show signs of illness. A cold, nothing extreme. He had a fever with his cold but he does that. The next week was a short week because of the United States Thanksgiving holiday. We kept him home as much as we could considering we still needed to see family we only visit once a year on this specific holiday. Everything was OK, he was getting better. That weekend he stopped getting better and seemed more tired. We took him in to the pediatrician to have him looked at over the weekend. They recommended rest and to watch out for the standard list of things that can sometimes be caused, in rare instances, by viral illnesses.
On Monday he was still tired but the fever and the mucous was gone. Dad mentioned he was having trouble breathing at night but he seemed fine during the day. He was even up and playing on and off Sunday. I packed him into the car and took him to clinic. He had already missed a week with the illness and holiday. I planned to have the check-in nurse take a look at him. If she considered him healthy enough to attend we would stay. If not I would do whatever she suggested. After all, the hospital was right next door and just a few floors above us would be a whole crew of medical staff. I reassured Dad we were in good hands and he seemed fine, just tired from the illness.
The nurse cleared us for clinic. She listened to his lungs and couldn’t hear any signs of pneumonia. I specifically asked her to check because of Dad’s concerns. His temperature was good, he stood on the scale and had maintained his weight over the weekend. We had a fun day. Our son took a nap in my lap over lunch while I ran his tube feed. It was an exhausting day but we made it through fine. When we arrived home in the evening the boy was so tired from the day he passed out on the couch. His breathing troubles were back now that he was laying down. When Dad came home I reassured him the child didn’t have pneumonia. We both agreed he didn’t look well and he wasn’t bouncing back like he should.
We ate dinner and talked about it. As bad as our son’s breathing sounded on the couch, Dad was emphatic it was worse at night. He looked completely distressed. I asked him to point out what was worrying him so much. We walked over to take a look and our son had rolled over onto his back while sleeping. For the first time I actually got a chance to see what Dad had seen at night. He was trach tugging and his ribs were flaring. I rolled him on his left side and propped a pillow against his back. It was better, but it still didn’t go away. We agreed it was time to take him to the emergency room.