Another Chapter

I haven't written a blog since Kyleigh's heart surgery. It's been quite a ride since then and Kyleigh has been keeping us busy. I hope to write a longer update blog soon but this update is more important. The very abbreviated back story is that there have been any feeding issues and Kyleigh has become very aware of her NG tube. She pulls it out multiple times a day and gags and chokes quite often. The decision was made to move from NG to G tube meaning a tube would be surgically placed directly into her stomach. This brings us to today as Kyleigh was scheduled for the surgery today.
Unfortunately I'm going to be sharing bad news. Kyleigh was not able to have her surgery today. Her airway has gotten smaller since her her heart surgery and they were not able to intubate her.  It seems her recessed jaw has not grown at the same rate as the rest of her body which keeps her tongue and other soft tissues too close to the back of her throat. This is not causing any obvious problems with breathing at home but as she continues to grow it most likely will block her airway! So we will be scheduling an appointment with the craniofacial team to begin the process of fixing Kyleighs jaw. The first part of the process is the most upsetting to us.  Kyleigh will likely need a tracheostomy. That means a tube would be placed in her throat for her to breath. THIS IS NOT A BREATHING MACHINE! In fact it wouldn't even be connected to anything. It simply allows her to breathe through an opening other than her mouth and nose. This will protect her airway as she grows but will also allow her to have the surgeries she will need. We have not talked to the team officially but it's anticipated that it would be about a year long process.  So more prayers for Kyleigh would be greatly appreciated.  I will try to update as much as possible.