Trip to Vanderbilt

Today Elizabeth had a rigid bronchoscopy done at Vanderbilt, to check her airway for the "floppiness" that our transplant Dr saw back in October. They wanted to see if there was some granulation tissue blocking her airway from where the trach site is healing, or what could be causing the issue. This floppiness is the reason that Elizabeth still requires oxygen during sleep. She did well with the procedure/anesthesia. They had planned to keep her overnight for observation, but we asked if we could just stay in the area at a hotel to avoid her being in a germy hospital. Thankfully they agreed and she has been sleeping most of the day here at the hotel.

We unfortunatley didnt get the news we were hoping for. The ENT Dr said that her airway appears to be collapsing above where her trach was and further down her airway as well. He did seem pleased that she has not gotten worse, and her oxygen requirement has not increased, it actually has been decreasing and sometimes she doesnt require it at all. He basically said our options at this point are
~To have a CT scan done to make sure there are no other arteries/vessels compressing her airway and if that is the cause - have surgery to correct it. The ENT Dr here recommended that if surgery is necessary we have it done at Texas Children's by the surgeon who did her aortapexy.
~Replace her trach to ensure that her airway is open and she doesnt not go into distress.
~A procedure called stenting where they place a stent in her airway to keep it open, this process would mean trips and procedures about every 3 week at Vanderbilt, for an unknown peroid of time.
~OR Wait it out and see if she can out grow it. Which is possible, but given her low muscle tone, may be unlikely.

Our biggest concern is that if Elizabeth were to get sick and have any inflammation in her airway from a cold, flu or infection, her airway could basically close off. Scary to think about, so for now her trach site will not be closed~just in case a trach needs to be replaced in an emergency situation, we would be able to get an airway to help her.
I realize this isnt the worst news ever, but it definitely not what we want for her. I hate her having to  go through more testing, anesthesia and hosptial visits. But its just another dip on this roller coaster ride we cant seem to get off of!! We will be returning to Vanderbilt in 3 weeks for a follow up with ENT and have the CT Scan done at that time. We will then travel to Houston the week after for her 9 month post transplant evaluation, we will have all the results from the CT done here to take with us and hopefully be able to come up with a plan then.


Other than this news, Elizabeth continues to do well at home. She has remained healthy and is making progress slowly with therapy. Still no crawling, walking, or standing but she will get there in her own time. She is doing well on the new feedings, but has lost some weight so we are trying to get that all figured out. This coming week will be one year since we left Tennessee for Texas, in hopes of saving Elizabeth's life. The trip to Vanderbilt today brought back many memories, and again reminds me no matter what news we receive to remain thankful!