Gearing up for a trip to Houston

In my last post I mentioned that we were and have been waiting on decisions regarding Elizabeth's airway issues. We will be going to Texas in August for a repeat CT angiogram, rigid brochoscopy and consult with surgery, ENT and the transplant team. They will give us our options for airway surgery, and if we agree to the it she is already scheduled for surgery while we are there in August.


We are scared, nervous, and worried about the potential surgery. Not knowing if what they recommend will help or how recovery from this surgery will go for Elizabeth, if we chose to do. The advantages and quality of life changes from having a successful surgery would mean that the opening in her airway where her trach used to be, can finally after almost 3 years be closed. This means that Elizabeth would be hopefully no longer need oxygen during sleep, she could breath freely and unlabored, she would burn less calories helping her grow. She will able to participate in water play at school, go swimming, play in the sand, take a REAL bath and be able to play and splash in the water like all the other kids do and hopefully be able to do aqua therapy which would help strengthen her muscles. This could be a chance to add a little more "normal" to her life. But the risks of such a major surgery are also very obvious, she is immune suppressed, will have to be sedated/paralyzed for part of recovery. The risk of infection and just being in a hospital again scare me to death. She is getting older and I really think she understands alot more of what is happening and I know she will be scared and it breaks my heart. We are unsure how long recovery will be for this surgery but were told to plan for a couple of weeks. The thought of being away from home again, and not knowing for how long....is not a good feeling either.

Please pray that we are able to make the right choice for her regarding this, and that the Surgeon and Doctors can be confident in their treatment recommendation. We still don't know for sure what options will be given to us but we want to do what is best for Elizabeth.