Benjamin's goal for this weekend is to get off the ventilator. He's been on it for 8.5 weeks already. They've been doing pressure support tests daily which means that his ventilator is set to bi-pap (another breathing apparatus). Right now he's been doing 2.5-3.5 hrs every 4 hours on the pressure support. Today they had to stop it after 3 hours this morning because he was just too tired. So we will see whether his goal for Monday will be reached. Personally I think it will take a bit longer yet. His lungs are just so damaged from the RSV. But he is getting there:) He's been much happier this week which is so nice. Wednesday he was even dancing to the music in his bed. This morning he had an EEG since his seizures were still not under control before he was admitted to the hospital. So with them going down on the sedation they want to make sure they have all the right medications for him. Especially since he is on ativan (a drug that controls seizures) for sedation. So hopefully they can figure out the right cocktail for him. He is also being fitted for new orthotics since his other ones are too small for him. And they are adjusting his standing frame since he is also too tall for that now. He has gained weight since he's been in the hospital. Well actually only the last few weeks since before that he lost weight and had to gain that weight back.
In other news Kyle is becoming quite the talker & thinker. The other morning we had orange, strawberry, banana juice for breakfast. I told him that we were having that kind of juice. He then sat at the table and was drinking it when he looked in his juice and asked where the bananas and strawberries were. I tried to explain to him that they were made into juice and were in the orange juice. To which he replied that they were hiding in the orange juice. Then he finished his juice looked in his cup and asked where the strawberries and bananas were. I guess he figured they'd be at the bottom of his cup.
And Devon has now pulled himself to standing over the last week. He's getting pretty good at it. He still does the half crawl/half bum scoot but now he is actually getting things off the coffee tables and couches. Can't just put it on the table now;)
1 comment:
You sure have your plate full with your children. At least it keeps you busy .And the choir on top of that. We are glad to see that Benjamin is making progress and that he is much happier. It is sweet to see that Kyle is thinking about his brother and that he is learning new things every day. Also Devon is getting interesting in new things. He got to be a hand full now when he pulling himself up on everything. We would have liked to hear you sing this weekend but cannot be there because Eleanore is working. Got to do that an other time. Well give a big hug to all of you and we keep on praying for all of you . Love Dad and Eleanore
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