Friday, June 25, 2010
What's next for Grayson
As a mom you learn what each cry means with your baby. Well, we could not hear Grayson cry because of the trach. The trach is located underneath where your vocal cords are and when you talk you push air above the vocal cords and that is how there is sound. With a trach there is no sound. This was one of the hardest things to overcome for me a I learned all about trachs. As his airway got stronger and his lungs developed, he would make sounds over top the trach, even though they are very airy sounding its a little peice of heaven to hear them. The goal with an infant or anyone with a trach is for them to be able to wear a speaking valve. This is a little button thingy that goes over the trach and forces air above the vocal cords so that they have the ability to use their voice! Its the absolute coolest invention for parents who have never heard their childs voice or heard them cry because now we can!!!! Grayson could only tolerate his talkin button (that's what we call it)for a few seconds at first, but now he wears it all the time:) We are able to hear him giggle and coo and i swear he is trying to say mama! We know that this is the next step to removing the trach, you have to be able to breath with your natural airway not an artificial one (trach). So, we were told there is a series of things that Grayson needs to be doing to have the trach taken out, first no vent...CHECK,second come off his oxygen during waking hours....CHECK,third tolerate speaking valve...CHECK, now our big mission is to be able to tolerate the trach being capped off (basically you put a lid on it so you have to breath on your own). We are working on this one its still new to him, we just got it not too long ago. The other issue is dealing with some mild sleep apnea, and thats kinda scary because it may take a surgery to correct that. We go next week to meet with a very highly recommended surgeon to find out if anything can be done. If he can not help us then we may be headed to Cincinnati for a very lengthy stay to find out if their big docs can help him. Either way I just want to know! If he is going to keep the trach, then fine, I know how to care for him with it. I just want to be his mommy and not have to worry about all these things on a checklist anymore! He is perfect in my eyes with or without it, and he is soooo happy! I am ready to just enjoy the little boy that God gave us, and has blessed our family with and these other things can just be secondary.
Posted by nicki hill at 11:17 PM