The last few weeks have been chocked full of milestones and improvements in Tinsley’s overall health. He continues to show terrific stability in his ability to maintain his breathing and oxygen saturation with only normal “room air.” His head control continues to improve and all of his therapists through First Steps are regularly surprised at his progress week to week.
He only had one serious incident, which was last week. Tinsley had a small skin irritation from one of his sensor stickers. We loaded him up in the car and he did not look especially well once we got to the doctor’s office. We put him on oxygen and he appeared to improve. However, once we got him in the car again he had significantly decreased his respiratory rate and was foaming at the mouth.
It has been a very long time since I last wrote an update on Tinsley. Let’s just say that for the most part things have been going swimmingly. Swimming being something that Tinsley cannot do until he no longer has a trach (although I am not sure how well he would do with that anyway).
Dr. Escobar, Tinsley’s developmental specialist, explained that it is as if he has been in a serious car accident and needs the extended period of time to recover. Tinsley definitely has some physical delays, which are common with babies with achondroplasia, but with his added medical complications he has a few more.
However, his brain is very sharp! Everyone comments on how intelligent he obviously is and how amazingly social he is. He is excelling beyond expectations in both of those areas. Tinsley has an amazing attention span (the envy of his mother) and even without language he tells us how he is feeling.
Back in the hospital for the last few days. Tinsley is doing better than ever and he was admitted just so Mom and Dad could learn about how to support him in his breathing. He has been working so hard to breathe that he is probably using energy that he needs to grow.
He will be on a ventilator just for breathing support in a CPAP setting. What that means is the machine will help to inflate his lungs, which should not only help making breathing a bit easier but also help move out the mucus and fluid that has been sitting in his lungs to give him even more lung capacity to use to breathe.
Admit it, the only reason you have bothered to read my Tuesday posts is to get an update on the kid. Well, instead of continuing to play the game, I have changed from “Twitter Tuesday” to “Tinsley Tuesday” so you now can get what you want straight out.
Afterall, who am I but a proud father that enjoys shouting out about his son?
Tinsley has now been out of the hospital for 11 days and seems to be doing very well. He has not required anything out of the ordinary (ordinary being breathing support with oxygen, trach, suction, and breathing treatments and feeding support with his g-tube and a continuous feed). He has been more and more adept at using his hands to grasp things (as you can see in the above picture as he yanks on the elastic holding his trach collar on). That head is moving more all the time as he build agility and freedom of movement.
Hidi painted is room a light green over the weekend and I am working on a mural design of a giraffe, hopefully to be completed by this time next week. That means that the kid is living on the floor in the living room, something that comes as a thrill for him because he is now able to spent more time involved in family life. The dogs enjoy “kissing” him, but have been great about leaving him alone.
All in all we expect him to continue to improve. We continue to welcome your support through prayer and any other help you may be able and willing to offer.
After no less than 29 days in the hospital, Tinsley is finally home. He is now on a trach and is getting continuous feeds on an n-j tube. We have many new pieces of equipment and around the clock care, but in less than a week we are starting to settle into a new routine.
We will also have the help of a home care nurse who hopefully will be starting within a week. I have to admit that stress is high and sometimes the overwhelmed feeling is accompanied by tears. All in all we are trusting in God’s sovereignty and the grace that he has already shown our family, especially Tinsley.