Back Home Again

Bryson came back home again on Saturday. Nursing care has been switched to nights. Daisy is working the night shift Monday through Friday and Doug on weekends for now. He is doing okay now.

I am in the process of adapting clothing for him to wear as it is difficult to dress Bryson. Tee Shirts are near impossible to put on him as he has his feeding tube and traech that would get in the way. I bought some tee shirts in a larger size and have cut them from the neck down the sleeves and placed velcro tabs on the openings. They make a soft velcro for babies now and that's what I'm using. I hope it works out. I have a few more to finish and a special surprise to make and I'll ship them off sometime this week. I hadn't thought about it but there really is a need for adaptive clothes. They make them for adults, but there is nothing on the internet for children. If it works out, perhaps, it's a business I could start. Through the years I've found it terribly hard to find toys and theraputic things appropriate for Bryson and what is offered in Adaptive Catalogs such as "Abilitations" is quite expensive and has limited use. We've had to be very innovative when it comes to Bryson, his care and development. It's really amazing some of the things we've come up with. All very ingenious.

Relapse

Bryson has had a relapse. He was placed back in the hospital on Tuesday Sept. 15th. His saturation levels dropped to the 80's and his secretions were a little yellowish. Dana called EMS because the home equipment was not working properly. As soon as EMS got their oxygen to him, his sat levels started to increase. They transported him and while in the Pediatric Unit at Madigan Army Medical Center, he started having seizures. They are working to get Bryson well with antibiotics to treat whatever bug was making him sicker and now are adjusting his meds for the seizures. Seizures often come after Traumatic Brain Injury and he had been on a mild dose of dilantin, more as a preventative, but now that the lesions in the brain tissue may be causing the seizures, they are having to take a second look. His heart and his breathing have remained normal, even through the seizures.

It is hoped that he can come home again perhaps tomorrow, and hopefully with more approved nursing care.

Please keep praying for Bryson, his Mommy and his Daddy who is now down range.

Dori

Home Sweet Home

Bryson was discharged from the hospital and is resting and recuperating comfortably at home. Daisy his nurse started today. I am so glad he's able to be home in his own bed, in his own environment where he is loved.

I don't have too many details, but will write more as soon as I know more.

Please keep them in your prayers as they transition into a different way of life.

Update

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.

Many things to Celebrate!

Not only are we happy to celebrate Bryson coming home, but tomorrow is Dana & Travis' 4th wedding anniversary. AND Travis just yesterday made Sargent! We are so proud of him. He deserves it!

Getting Ready for Bryson to come home

We've been working the last couple of days getting things in order for Bryson to come home. He'll be discharged either Saturday or Sunday according to the doctor that performed his Traecheostomy.

Bryson is doing so much better. His color looks good, he's moving around more, but today he was getting kind of stiff which he will need a lot of physical therapy to prevent that from happening. He has had splints made for his hands to prevent them from curling up into a fist. We bought him some Uggs boots to keep him from getting drop foot from being in bed so long. The muscles tend to atrophy from lack of use and they draw up and become rigid without regular therapy to keep things moving. The physical therapist also said that helping him to sit up will also help with his therapy. This is exactly what is planned once he gets home.

We are having to set up the crib again and get baby blankets as if we were bringing home a newborn. The Sleep Safe bed is on order and we don't know how long it will be until that arrives, hopefully soon. To see a Sleep Safe bed visit: http://www.sleepsafebed.com/Products/sleepsafer.htm
It works very much like a hospital bed, but is more pleasing to the eye.

Dana is coordinating getting his Home Healthcare on board for when he comes home.