Bryson's Blog

Living with Trisomy 13

Tuesday, September 08, 2009


I apologize for not posting for a few days for those of you that have been following Bryson. I got back to South Carolina Sunday Evening and spent Labor Day laboring to get my house back in order.

Bryson is likely to be discharged from Madigan Army Medical Center tomorrow. Dana and Travis are ready for him to come home. His bedroom is all ready and set up for his needs. Thursday Olympic Pharmacy delivered all the medical supplies and equipment to make Bryson comfortable at home. There was so much stuff it seemed overwhelming at first, but once we got some storage systems that will work to keep things organized and tidy it was looking like a little boy's bedroom again with bright stripes of all colors and feels really homey. Not a hospital room. Travis has installed a flat screen TV so Bryson can watch Rescue Me with his Mom.

Dana got to change out the Traech tube today and she said she was really nervous, but Dr. Boseley boosted her confidence and she decided it wasn't so bad after all. That will need to be changed weekly at a minimum. There will be daily maintenance and cleaning and suctioning of the Traech. Daily, he'll have his medications and vitamins. He'll have a continuous feed line. He's now up to 30 ml per hour so he's on the right track. Before he got sick, he was 30+ pounds, but dropped down to about 25 and last week he was up 2 pounds. He'll need daily physical therapy to keep from having his muscles atrophy or his joints become stiff. They even have equipment that will be available when she needs to take him to appointments. He was fitted for a new car seat and his Bingo Stroller is being modified to his new needs.

The Sleep Safe bed has been declined, but hopefully an appeal will overturn their decision. He really needs this type of bed as the head of it inclines so that his food stays down so as not to aspirate. His immobility also makes this bed necessary as he needs to be turned and repositioned every 2 hours.

I finally got to hold Bryson on Thursday and it was very cathartic for me and hopefully Bryson. I sang to him songs that I used to sing to him when he was a baby. He opened his eyes ever so slightly and was looking at me. I know Bryson is in there and wants to come out and play. He just needs time to heal and get strong again. I pray for that day to come along... soon.


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