Well, it certainly has been awhile since I last updated our blog. Last month was certainly a challenging month for us in terms of deciding what we should do to best help Maya from a medical standpoint. Maya is still having issues with her lungs since her pnuemonia in August. One lung has some permanant damage as a result of aspiration (swallowing her secretions the wrong way and into her lungs over a long period of time). Maya ALSO is a risk for medical complications due to the fact that she has severe sleep apnea that we have been unable to treat. She has not tolerated CPAP, however when she wears the machine then air that is supposed to go into her lungs is escaping out the hole in her neck left by her trach. We spent all month determining that most likely Maya would need to be re-trached in order to give her access to CPAP through the trach tube. Then the Doctors discussed that if she were to be trached NOW, they would want to proceed with her open heart surgery (this has been an anticipated surgery) now as they do not want to do it with a trach in...too many risks for infection....secretions from the trach tube getting to the incision site.
So we spent a lot of time debating all of this and were even denied coverage for nursing care if Maya were trached which threw a whole new set of issues at our family...a trach without nursing care would be very challenging to manage. We had almost decided our plan when we met with Maya's ENT last week. He encouraged us and it makes sense to us. To close Maya's fistula (hole in her neck) so that the cardiologists can proceed with surgery (we would do this whether or not Maya is or is not re-trached), but instead of quickly doing heart surgery and immediately traching her...we will wait for her hole to heal and wait a bit before heart surgery (this first procedure is scheduled for Feb. 9th), we will inject Maya with 4 doses of botox to her salivary glands to minimize any secretions. We would then spend every night working hard to get Maya to tolerate CPAP (where the air would actually get to her lungs providing her possibly the best sleep she has ever had...that hopefully will help her to tolerate it). Then in 2 weeks-3month post surgery (before the botox wears off) do Maya's heart surgery...and see how she is doing. If we have to...we will trach her. But, there is an outside chance that a good heart and tolerating CPAP with a closed hole will make her healthy enough to avoid re-traching her, and best of all could help decrease aspirations...our understanding is that a trach could actually worsen Maya's swallow causing her to aspirate MORE.
There is no right or wrong answer we truly believe at this point, but we can give Maya a chance at life without a trach. And we can always pray hard that through her Doctors God can work a miracle of healing in Maya that no one would expect...it has happened before that is for certain! And if we have to, we can trach her again. Meanwhile, Maya is doing TERRIFIC! Hardly a kid who looks like she has compromised lungs, a weak heart, and severe sleep apnea! She lost her first tooth (though we never found it!), is still showing more signs of expressive communication and wants to be with me, Dean and other kids and people all the time. She rarely goes off to the corner to lay down, but rather wants to be a part of the social world and interact with others. She is so amazing, and the more she interacts the more Addy and Teya begin to notice Maya and want to engage with her too.
This season of medical intensity in our family certainly has not and is not concluding any time soon. Addy is learning lessons no 3 year old sister needs to about hospitals and operations, and not having Mommy and Daddy home when Maya is in the hospital (or when we are in the hospital). But like Maya she is a strong little girl who is still all about pink, ballet, singing songs, and dancing about the house screaming with laughter. I think God knew we needed that in our house during this season. And of course He has used Teya to be comic relief. During the most difficult of times she continues to babble and make various attempts at making mom and dad laught at her...her smile, her waddle, her attempts at running, climbing and trying her best to be a 3 year old like Addy is truly our definition of "cuteness."
We will most likely schedule open heart surgery in the next week or so. I am thinking anywhere between March and May. Please pray for health for Maya, as health is essential for surgery and success! And of course another illness like the one in August would be devastating! And of course our entire family could use your prayers.
