We talked with Rhett's ENT the other day, after him and Rhett's cardiologist had a chance to talk things over together. (I must mention that these two men are amazing, and are incredible doctors.)
Anyways, the ENT called me and we discussed the UPPP vs Tracheostomy . The UPPP is going to be the very best chance that we have at giving him a semi normal airway. So we are going ahead with this. We don't have a date set, but Dr. ENT was going to fill out the paperwork to get it scheduled.
The problem we run into is, the tethered cord . When I told him that we had just found out that he had a tethered cord, he said that he would leave it up to the Neurosurgeons to decided if that needs to be done before the UPPP, which means that if he does need the cord surgery first, then it will mean a possible multiple day intubation, as well as a pro-longed PICU stay.
So we have scheduled the UPPP surgery for sometime after the 12th. We decided to schedule it now, because should he need the cord surgery first, then it will be easier to cancel the UPPP surgery rather than schedule it at the last minute. So as far as all of the surgeries go, everything lies in the hands of neurosurgery now.
We still go up on Monday for the Upper GI, and meet with the general surgeon who will do the Nissen/G-tube if needed. Who knows where we are going with this one.
As far as the heart cath goes, we are not even going to attempt that. His cardiologist says that there are way too many risks to do a heart cath right now. They don't even want to go there. I have also been told by the cardiologist, that no amount of meds in the world are going to help Rhett's Pulmonary Hypertension right now, until we treat some of the underlying airway and reflux problems first. Time is of the essence right now, before the Pulmonary Hypertension becomes irreversible.
His ENT made it very clear that the Cardiologist is becoming increasingly concerned about Rhett, and we need to get on top of all of these things very soon. My stomach dropped when he told me this.
So for now this is our plan, I am sure that it will change as we go through the appointment on Monday, and the talk to the Neurosurgeons on the 12th. We are in for a long couple of months, this I know.
We are also going in to the UPPP knowing very well, that if it doesn't work they won't hesitate to do a tracheostomy. It hurts to see my son who loves life so much go through all of this. It just isn't fair.