Our next hurdle

nanakwaz

I haven't updated on here for a while because things have been pretty uneventful for a while.  Still nothing major but Drake is going to have another procedure coming up soon.  

We did a swallow study a couple of months ago and they saw a small hole at the base of his laryngeal cleft repair.  It really is very small but he does have some flow-through to his trachea when he swallows water (still no food orally).  They did a scope a week ago and found the hole and they think they can close it with a minimally invasive procedure kind of like a scope!!  Yay!  Sometimes it takes more than one time to close it completely but the surgeons are very optimistic!  

After this is done hopefully we can be more aggressive trying to get him to eat and swallow better (he still had a weak swallow in the study).  Once he can eat we can talk about pulling his trach!  This is all going to take a while but at least we are on the right track!  

Thanks for reading and keep my little man in your thoughts!    

mskolman

I hope it goes well! I can relate with swallowing/eating problems. My son is a year old now and still doesn't eat by mouth. Every time we give him food orally, he chokes and then cries. I used to chalk it up to being on a ventilator for so long, but now I am beginning to think there is something physically wrong. We did a swallow study at about 6 months of age and he was not aspirating. We are going to the ENT in a few weeks and hopefully will get some answers. A step in the right direction for you is definitely something to be celebrated! Hopefully it can be done with minimal invasiveness.

autumngirl

good luck with everything!

Pierce3252

Oh wow - i hope it is the minimally invasive route for little Drake!  Its good to know he's well on his way to pulling the trach!!!  Yay!  You guys are in my thoughts & prayers!