Yesterday Eden and I returned home from another trip to Denver. I've been thinking a lot about my need to update the blog, but I've been avoiding it. I guess now is as good a time as any to talk about the recent information we have received from the doctor in Denver.
Eden had another bronch on Monday and everything went so perfectly. They actually took her back into the operating room on time (usually they are running an hour or two behind schedule), the procedure was fast, she woke up from anesthesia beautifully, and within only a couple hours from the start time of the procedure, we were discharged from the hospital and on our way back to my sister's house. If only the news would have been as perfect....
Dr. Prager said that despite the steroid medications, and the dialation and manual stretching of her airway that he has been doing every other week, it is not working and her airway is still trying to close up. If we continue as we have been doing, he could dialate it every couple weeks, but it doesn't seem like that will work for the long term. Also, he can't just leave it as is because it will not stay open enough for her to ever get her trach out. So the answer is to go back to the stint.
Right after the reconstructive surgery, a round, plastic stint was sewn into her airway to hold the cartilage grafts in place while they healed and attached to the existing airway. The stint came out after about three weeks and that's when the manual dialations began in order to stretch out the airway as it continued to heal. The plan now is to do another dialation of the airway to stretch it back to about 6mm in diameter, and then he will sew the stint back into her airway and leave it there for two to three months. The hope is that this will give her body enough time to get used to the grafts and basically "accept" the new airway, all while it's being held open by the stint.
Unfortunately, we have no idea whether or not this is going to work. In two or three months, after the stint comes out, is when we will know whether or not we are completely back at square one. I have no idea what will be the next step if this doesn't work. I will try my best to remain hopeful and positive that it will work.
It is all so discouraging and disappointing though. Allow me to vent my frustrations for a moment, and then I will be hopeful and positive like I just mentioned... :)
With the stint in she will no longer be able to wear her speaker valve, and her voice has been getting louder and so much fun to hear. She has just recently really been recognizing her sounds and experimenting so it's been such a blessing to hear her "talk" and giggle. We will cherish this for the next couple weeks, because once the stint is back the voice is gone for a while. This just puts her further behind on her ability to speak sooner rather than later. Her speech and language will just be this much further behind now.
The stint also puts quite a bit of pressure on her esophagus so swallowing is difficult and uncomfortable. This means that the amazing progress we have made with her eating over the last week or so will most likely stop again.
The incision on her neck is finally starting to look mostly healed but now we are going to have to start over.
After the stint comes out in two or three months, these regular visits to Denver will start back up and possibly be starting over with exactly what we have been doing since her surgery in the beginning of March. This means it will most likely be close to the end of this year before we know what's going to be the long term plan, so I feel like the rest of our lives will continue to be on hold for so much longer than I had hoped for.
And for one last complaint, due to limited openings at the doctor, and not wanting to delay the surgery, this is most likely going to happen the weekend of her birthday and we will have to stay in the hospital the night of the procedure. Poor girl...
In trying to be positive though, the good news is that once the stint is in we most likely won't have to return to Denver until it's ready to come out so at least we will be able to have a "normal" and fun summer. With the trips every other week for the last few months, time has just flown by and we haven't been able to do too much as a family. We are looking forward to staying together for the summer months and having more time to do fun things.
I will continue to pray and hope that this will work and we will be able to make significant progress. We will make the best of the next couple months - hopefully hospital free!
