Results from the Bronch

Our prayers were answered and Eden was healthy enough for the bronchoscopy to go forward. Yay! The end results were basically what I was expecting but this appointment was a critical step in moving forward and creating a plan. Here's what was explained to me by the ENT doctor:

The problem area in Eden's airway is a very small portion above her trach and below her vocal cords. In this tiny area there appears to be really extreme swelling that basically restricts all air flow through the airway. The doctor said it was so tight she could barely fit her scope through, and Eden was only getting tiny bubbles of air through. This explains why she needs the trach in general, and also why she has not been able to tolerate the speech valve piece which blocks her from exhaling through her trach so she can make sounds and exhale through her mouth and nose.

Unfortunately the doc had no idea what was causing the swelling. I asked her if it was possible that it was damage from a bad intubation because she had so many tramatic intubations to the ventilator in the NICU, and she said it could be scar tissue, but it didn't look hard like scar tissue usually does. Ok, so I'm pretty confused at this point - what could be causing the swelling in only that area when below the trach and above the vocal cords looked ok? It doesn't make a whole lot of sense to me.

So where do we go from here? The doctor said she thinks Eden just needs more time and that she would recommend another bronch next summer to see if there have been any changes. Unfortunately though, she isn't optimistic at all about Eden's trach even coming out next summer. Sigh... this could be years? Ok... I can handle that and I think Eden can too.

So time and waiting is this doc's plan of action. My plan - to get a second opinion. Something is causing the "swelling" and I would like to have a better understanding of what it is and if just giving it time really is the only option. Looks like we'll be taking a road trip to see another doctor - I just need to make sure our insurance is on board.

Fortunately the doctor did say that Eden's vocal cords did seem to be working ok. They were moving as they should, but she did say they looked really small. She didn't have any further info for me though as to why that may be, or what that means for the long term. I guess I'll have to get a second opinion on that too. We've got time on this one though because I guess if she is going to have her trach for years than I'm not too sure she'll have much of a voice anyway. I guess Brad and I better start learning our sign language...

On another note, Eden has been having trouble with her ears so while she was under anesthesia the doc also went ahead and put tubes in both her ears to help drain the fluid that keeps getting in them. Hopefully we will get some good results there and they won't cause any further problems.

So even though all the news was basically not too good, I walked away feeling at peace knowing that step was done and we can move on to get another opinion. No matter what happens, our life with a trach is ok, and I have come to accept it as is and try to focus more on the blessings of our beautiful, happy baby Eden.