Monday Nov. 5th

Wow what a day today. We had our family training again, so we met with each discipline of therapy, speech, occupational, physical, and therapeutic and then of course nursing.

Cheryl the speech therapist went over the goals for Christopher, working on consistent swallowing. We are trying different tastes, using sweet and sour flavors to initiate increased saliva to trigger him swallowing. He was not being very cooperative this morning. It took us nearly 15 minutes to get him to swallow, just once. The photo recognition started out pretty well, but soon came to a halt. I know he didn’t sleep much last night, so he appears to be pretty tired.

No time to rest we were off to the gym to see Stephanie for his OT. We worked on pivot turns to and from the wheelchair to the mat; we did stretching of his upper body and discussed getting him onto his stomach once the pump site heals completely. He still has only been on his stomach the one time with Megan in his PT session. Much of all we are going over today we have been doing for the past several weeks but the reinforcement is good. We had a little break so we let Christopher get back in bed for a little rest. He was having a hard time staying awake during the sessions this morning.

We started back after lunch with Megan; she first removed the cast from his right ankle which revealed a nice size pressure sore on his ankle bone. We spent some time assessing it and decided we would have to come up with a different way to splint his foot, this just wasn’t working. The next bit was going over transferring Christopher in and out of the car. Breaking down the wheelchair and getting it stowed in the car. We ended up combining this session with the therapeutic therapy session which involved us taking Christopher on a trip out into the community. Once they were comfortable with us transferring him into the car we were off to Richards Variety Store in the Peachtree Battle Shopping Plaza. Christopher got a little car sick on the way so we had to pull over to make sure he was okay. We turned up the air and patted him down with a cool cloth and were soon on our way again. Once we arrived at the store, the therapist observed us as we made our way around, up and down the aisles. Pretty neat store, so we had to buy something, well we were shopping.

Part of our training this afternoon also involved demonstrating our ability to safely manage the wheelchair over the curbs and through busy areas. Much of this, I am sure, is very daunting for people who have had no experience. We didn’t dump him, so we got checked off. We were soon back at the hospital and in the room to start our nurse training. Since Christopher has been able to have the trach removed and many of the other tubes and drains, he will be a lot easier to manage. He will be continuing with the tube feedings and he still has the suprapubic catheter, which helps drain his bladder, will need to be changed monthly. Debbie changed it today as part of the training session, we needed something to do. We have been doing much of the feeding and personal care, showering and changing already. Dr Dennison reprogrammed Christopher’s pump, adjusting the concentration of the medication. They are still trying to find the correct dosage for him.

I think we were all exhausted by the end of the day. Coleman came in for a little while and joined us during the OT session and Mike Lavelle came by, we thank you. Mike and many others have asked about things we may need once we get home, right now we are still unsure. The lifts are our biggest concerns at the moment, the one for the garage will be installed Wednesday. We still do not have a date for the one inside the house.

We thank you all for your concern, we love you and look forward to being home and welcoming visitors.