Monday Sept. 24th

Busy morning, Debbie had Christopher out in the garden and then in the gym, racing on the stationary bike. He was trying to give Lance Armstrong a run for his money. With the steroids on board Christopher was pumping out 42rpms on the bike. Debbie said as soon as they pulled him up to the bike and placed his feet on the pedals, he was off to the races.

He spent most of the morning and mid afternoon in the wheelchair, not getting back to bed until after 1:30. He wasn’t too interested in participating in his speech therapy session. I think he was exhausted. He did try some applesauce today and Debbie bought him a blow pop, to give him a little sugary flavor on his tongue. At first he made a sour face with the applesauce, but you could see the recognition of hey, this is pretty good.

Dr. Frankel, one of the consulting Neurosurgeons came in today; he had news regarding Christopher’s CT scan. In his opinion there was nothing of concern in the most recent scan, there is some fluid in a couple of areas, nothing that would be creating pressure that would warrant any surgical interventions. We asked about the possibility of inserting the Baclofen pump, (Baclofen is a muscle relaxer used to treat muscle symptoms, including spasm, pain, and stiffness). Christopher is currently receiving the medication through his Peg tube as an oral medication. The pump will provide a constant dosing level of the medication which has been shown to have increased success in patients similar to Christopher.

We are in the process now of trying to coordinate the procedure around our current discharge date. If we go home as scheduled, now Oct. 3^rd, we will have to come in for an outpatient procedure to have the pump inserted. Christopher’s trach would have to stay in until the pump is placed, which is a pain, we would like to get that out as soon as possible. He is doing so well with it capped. I am told they are planning to put in a trach button tomorrow. This is a small capped cannula which will keep the opening accessible in case of an emergency. It is less intrusive than what is currently in place.

So Debbie will either be trying to work her charm, or making a stand, to get an extension on Christopher’s go home date. We will need some additional time to get him on the surgery schedule as an inpatient. She is pretty good at both tactics.