Big things are happening this week. Drayke is scheduled for surgery this coming Friday!
The procedures being are: tracheostomy,Gastrostomy/Jejunostomy and a Nissen fundoplication. In other words his vent is going to be connected at the throat rather than having that infernal tube thru his mouth. His feedings will be going thru a tube that has a port on his belly. He WILL be able to feed thru his mouth but it will take time to get him used to actually feeding. The Nissen is for his reflux.
Drayke had an upper GI done yesterday and he does show signs of reflux. The doctors are all wanting to protect his airway at all costs. A serious aspiration could cause a non reversable downward slide. As much as I didnt want to do this procedure it is necessary.
Wednesday is going to be a big care conference with his doctors and the surgeons so we all are on board with what the next few weeks hold in store for us. This can bring us a step closer to coming home. Drayke does have a long road in front of him in the hospital but this is the first significant step.
He will be fairly snowed for about 4-5 days to make sure he does not pull out his trach. It will seal back up almost immediately during that first week. But after that we can start feeding him with a bottle or even solids. He can have a bath in a tub. He can use his bumbo chair. Just so many things are soon to be available to him.
I have been getting weepy by the overwhelming feelings. I am terrified, ecstatic, just a whole gambit of emotions. I will finally be able to pick my son up for the first time in months without having to have a nurse helping. He will no longer have to go thru getting tape put all over his face to keep the vent in place. He can start having the mobility an average infant should have.
Everything in his little world is changing.
6 comments:
Oh, Lorri, that's fantastic news! We'll be praying extra hard for you guys this week!
And don't worry about the g-tube. We love Dax's! It comes in handy more so than you would think, and you can get a good night's sleep if they're on continual feeds!
Good luck!
That is great news. Braden had the nissen fundo/gtube and trach. Not all at the same time. The trach was first. The other two were at the same time. All have been very helpful to Braden's growth and development. I know these procedures will make a world of difference for Drayke. Good luck to you all.
Yay! That is so awesome to hear!
I have been lurking and following Drayke's progress for a while now. There are many people from all around the world thinking good thoughts for you guys!
I have also been lurking from Seattle since the summer, and I am so excited / hopeful for you all and little Drayke! Best, best wishes to you all.
Oh, that is fantastic, wonderful, and just plain fabulous news! I am so thrilled for you guys!
Thanks for the updates - my family will be praying for little Drayke. He's such a tough kiddo!
Take good care of yourself,
Erin
we're all so happy to hear this! we'll be sending out some good vibes tomorrow for sure.
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