We had vent clinic on Tuesday. It went fairly well this time--Dakin's blood gases were a little high, but he had crud in his chest when she was drawing the sample. His chest x-ray looked good, though, and everything else is good. Dr. G (pulmonologist) was going to change Dakin to a larger size trach but decided against it.
The last time we were there we had briefly discussed doing trach collar trials (where Dakin's off the ventilator completely). Now, this was with Dr. C, the other pulmonologist. We brought it up with Dr. G, and he suggested trying him off the vent for 5-10 minutes, and he would come back to see how he was doing. We laughed at that--Dakin panics when he's off the vent at all. Sooo, we took off the vent, and Dakin lasted about 7 seconds. Needless to say, no more trach collar trials. His chest muscles are just not strong enough. This was disappointing, as I was hoping he would be able to come off for at least a little while, but at least at this point it's just not going to happen.
On the bright side, he is doing great otherwise. Despite not doing well in the trial, I am grateful that he is happy, intelligent, communicative and thriving in every other sense. It's ok with me that he will remain part machine (I am resisting the temptation to make a Battlestar Galactica reference here). I have so much to be thankful for.
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7 comments:
Maybe when you can explain it to him to not be scared (when older), it might work better?
I am going to figure out Handy Manny for him as a costume!
hey its ok, he is happy and he is such a sweet heart. I know it takes Sky about 5 mins to adjust from being on and going off. I wouldnt worry about it, he is an awesome little boy with great parents. Hugs Sheila
Dakin is one happy kid, big hugs and prayers.
Aw that is too bad, but he will get it figured out eventually, he is still a baby! Give him a hug and kiss for me!
Hey Devon,
Don't worry about it, Thats how we started, but we were told that thats how he would develop his muscle strength..so we persisted with it..and he has done very well. Ask your Dr. if you can keep on trying...love to you all:) take care...
Oh Devon you are so positive and he has such great parents I know that he will surprise you one day!! Time is good in time maybe he will be ok the more he understands!! I know it has really helped Tucker as he has gotten older to explain things to him he does so much better!! Just keep doing and being who you are, you are amazing!!
Laneah is finally ready to try being off the vent as well. I see it going the same as Dakin. I did take her off the vent for about 7-10 min. at home the other day but she was getting worried. I think she is ready but she may not agree. Sorry it didn't go as well as you planned.
Hope you have a wonderful summer.
HOw is Primary with Dakin or is it still Nursery?
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