We had another visit with the Trach/Vent clinic last week!!! In this appointment she sees a pulmonologist, ENT, and a special care pediatrician. They were wondering where all of her secretions were coming from so they put a drop of blue food coloring in her mouth to see if the mouth secretions were going down into her trach. About 1 minute later out comes bright blue stuff out of her trach. It was a lot and it continued for about 5 hours. That is no good. So we are going to try botox injections in her salivary glands. It helps reduce the secretions and they will also do a scope into her airway (broncoscopy) to check it out. And she will get her teeth cleaned. None of it is urgent so we will decide when we want to get it all done because it has to be done under anesthesia. Other than that she is doing great. Her doctors are always impressed with her:) We were informed (but we already knew) that she will have her trach for a lot longer. It is obviously up to Laynie when it will come out, but it will be at least a few more years. We also got her sleep study results and her central apneas have improved, but they were still worried with her work of breathing off of the ventilator, so she will continue to be on the ventilator at night for another year and then we will repeat the sleep study and hopefully she will not need it anymore!!!
She is showing us her blue tongue about 2 hours after the dye was put in her mouth...
Drake just seems to be getting so much older lately. He is growing into such a good boy!!! He still LOVES Elmer!
He is learning to swim this summer. He can swim under water, but he has a hard time coming up and taking a breath and going back under. He is swimming all over and can even dive for rings. He thinks he is a pro-swimmer, but he is actually pretty scary because he has no fear in the water!!!
Grandma Debbie came and was nice enough to go for a ride with Laynie in this little car!!!
1 comment:
If the botox injections don't work you could look into scopolamine. It's a patch used for motion sickness but causes dry mouth... Just something to keep in mind. We're in the midst of trying it right now, hoping to rid Caelan of some of his "juiciness" so he'll tolerate his speaking valve better. We know others that have had success with it.
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