January. Wow, what a beginning to the year. We started off a little rocky, with B and I both being sick. He got over it in one day, but I on the other hand took 1 week to get through it. Then we had a MAJOR incident with a new nurse. It was scary, landed us in the hospital and ended with a nasty trachea infection. My poor little B, he was miserable, and I'm sad that we had to go through that. But after a strong round of antibiotics and lots of TLC, he was back to his old happy self. Then the biggest part of our new beginnings was our big trip to The Cincinnati Children's Hospital for evaluation. It was a GREAT trip with lots of information. Here is the break down. We had a total of 7 appointments in 3 days. We saw their entire airway team, and on Wednesday, the biggest of the appointments happened. His broncoscopy. They put him under anesthesia and off he went into a cold little operating room. They stuck a camera up his nose, and one down his trachea. After 2 hours of waiting, we finally met with the doctors and got the news. His trachea is FINE...its growing like a normal trachea should grow. It is a rare looking trachea, since its all cartilage, but its something that they do see and they do follow. HOWEVER, since his mid face is pushed back due to his syndrome, here is where the issue is. While they were able to get a camera in his nose, it was a very small one, and it stopped once it got past the nose. Meaning, his face is closing off his upper air way. While we knew this from our team of doctors here in Austin, the Cincinnati team has a different way of approaching it. The ultimate goal is to get his trach out. To do this, he will need to have his mid face reconstructed. Our doctors here in Austin, want to do it when he is 6. Cincinnati wants to do it when he is 2..yes 2..TWO... in 6 months. WHOAH... wait .... what? Here's the deal, its an ugly ugly UGLY surgery. They will go in through his bottom eye lids with a "chisel" and break his face in half... I'M.NOT.EVEN.LYING. Then they will move his mid face as far forward as they can, put a retraction (halo) device on his face and head, and let his bones heal for 4 weeks. During that 4 weeks, Gabe and I will turn the device 3 times a day so that it pushes his face back in to place slowly. Kinda like the skull distraction device he had back in April, except instead of pushing out, it will pull his face back in. They told us to think of it like silly puddy....they stretch it as faaaarrrrrr forward as possible, and then slowly move it back into the right place. It will move his jaw out, open his airway, and HOPEFULLY if all sets well and goes well, we can work on getting his trach out...BY THE AGE OF 3!!! This is when I started crying.... this could be the start of a NEW and DIFFERENT LIFE. To hear that he can possibly be trach free by the age of 3 was just amazing. While I hate to put the little guy through this, I just know it needs to be done. After leaving the hospital, we cried. We celebrated. We grew more as a family.
This surgery is a HUGE decision. Not only mentally, but physically and financially. Its a HUGE commitment. Lots of decisions to be made. Will we stay there in Cincinnati for a month? Fly back after a week long hospital stay, then fly back for the device removal? Is 2 a good age? Will insurance help us with this? So many questions. We will sit with our team here in Austin and discuss. They don't do this surgery here. I cant even BEGIN to imagine seeing his face look any other way. This is by far MORE than just a cosmetic thing. Its a life changing surgery! But if we could get his trach out by 3 years of age....that is HUGE!!! We could get him ready for a "normal" life. School, sports, talking, eating....so many things could be different. I pray daily for peace of mind with this decision. We have AT LEAST 4 more trips to Cincinnati in the next year! Pray for us all!!
February. Whew... what a fast month! B has become SUCH a different child. He is OFFICIALLY walking/running all over the place. He loves to play hide and seek in the pantry. He climbs the stairs. He learned to blow and give kisses. and get this... he has a little "squeak" that sounds like MOMMA!!! yes... his squeaks are starting to sound like words!! We went in for our 6 month check up here at the trach clinic and his speech therapist there gave him his passimere valve. Its a cover that you put on his trach that helps him make actual vocal sounds. Its hard to learn to use, but he is slowly getting the hag of it. He has been super healthy this month (THANK GOD) and is truly thriving!
As I finish writing this, one of my favorite songs just came on... "you are the best thing" by Ray LaMontagne. He truly is the BEST thing that has happened...well him and Gabe. They have both changed my life and have made me a better person. I cant thank God enough for all the amazing life changes and blessings. I cant wait to see what the future hold for us. I see bright skies ahead. I mean it. Our rough sea is starting to calm. I cant thank each one of you for all the love, support and prayers.
A happy and calm momma,
-S
