Laryngotracheal Reconstruction

On Thursday we traveled to Portland to OHSU. Christian met with a Speech Pathologist, who is really cool, and we had a great visit. It was an extremely long day (to say the least). We had to wait a loooooong time to see each Doctor. Christian was not a happy camper due to the long drive, short nap, and mom and dad (trying) to get him to stay in a general area instead of running full force into every nook, cranny, and hospital room that he could.

It took a total of 5 hours to see 3 Doctors. Mind you, the actual time spent with each Doctor was about 20-30 minutes. Exhausting to say the least.

Our last visit of the day was with Dr. Milczuk. He talked to us a lot about laryngotracheal reconstruction . When we saw Dr. Milczuk for Christian's last surgery last May, he had touched on the idea that this procedure would most likely be in Christian's future. At the time I tried my best not to get worked up about that idea and just focus on what time would show us. There was always the possibility that Christian's airway could open up on it's own as Christian grew more.

I was kind of surprised when the doctor starting talking, right away, about the procedure. He said that he does not expect that Christian's airway will have improved enough to be able to take the tracheostomy tube out. He also told us that he generally does not recommend this surgery in children under the age of 4, BUT that Christian is a very healthy child who just happens to need a trach. He would benefit from getting the trach out as soon as possible, since it is the only thing holding him back from speech/language skills. On the same hand he told us that the surgery is a complicated one and is more difficult in younger children such as Christian.

The surgery would involve cutting a portion of cartilage from Christian's rib cage and forming it into a tube to fit into his airway. His airway would then heal itself, open, around the cartilage and then we would be able to have the trach removed.

We were told that there would be 2 options for surgery:

OPTION #1~ Christian would have the surgery and the trach would be left in. He would stay a minimum of 5 days in the hospital to recover. We then would take him home for a few weeks and bring him back to have the doctor put a scope down his airway to take a look. If all looks well and healed, the trach would be removed and allowed to close up on it's own. We would have to go back for more checks on his airway and I am not sure how frequently. Christian would be allowed to recover in the comfort of his own home (for the most part).

OPTION#2~ Christian would have the surgery and the trach removed all at once. This would require a hospital stay for several weeks. The first week or so he would have to be completely sedated because he would have a breathing tube down his nose and they could not take the chance that he would pull it out. It was explained to us that he would have to spend extended time in the hospital being weened off the medication that they use to sedate him and go through a rehabilitation stage after not moving his limbs in over a week. The upside to this option is that it is a one-time operation, with heavy monitoring for a few weeks and then it is done.

After hearing both options Jason and I knew that we were already leaning towards option 1. Yes, we would have to go back to OHSU a few times but the idea of Christian spending weeks in the hospital is unbearable. It is hard enough to imagine the 5 days minimum that we will be there after surgery. Christian pulled his breathing tube out so many times when he was teeny tiny. I can't stand the thought of the heavy sedation that it would take to keep him from pulling it out now that he is bigger and stronger.

Dr. Milczuk basically told us that he is ready to do the surgery when we are. All we have to do is call and schedule it. He said he would take a look at his airway and if he did not see significant improvement then he would proceed with the laryngotracheal reconstruction. He also told us that there is no hurry and to think about it.

So we have a lot to think about. It is exciting to think that Christian could lose the trach this year. It is equally terrifying to go through this procedure to get to that point. This surgery is a BIG deal.

What if we make the wrong decision?

Christian's insurance will definitely be maxed out after this, maybe even before it is all said and done. What if we can't find a secondary insurer who will take him with this pre-existing condition? At the same time there is nothing more important than Christian's health and we have to do what is best for him.

This is so hard.

It breaks our hearts to know that our son, who has been through so much, still has this huge hurdle before him. It will be a difficult one for all of us.

We are a strong family though and I know that just because you can not hide the hurt your heart is feeling, it doesn't mean you are weak. I mean, no parent can stand the thought of their child in pain. We know this is part of our path that we must take and that God is with us for each and every step.

We know that this surgery is a positive thing for Christian.

It means being able to say goodbye to his trach once and for all.

It moves us that much closer to getting to hear his voice.

It means having his room be free of medical equipment and supplies.

We trust Dr. Milczuk and know that he would never suggest the surgery if Christian was not ready and could not tolerate it.

We know that Christian handles surgery very well. He is always a trooper and his recoveries have gone smoothly.

We are doing some research and exploring some avenues as far as insurance. We are looking to possibly have this surgery in the next few months, when the roads will not be a concern for travel, with our hope being this will all be over with by this summer.

Please pray for us. Your love and support mean so much to us.

AND this little guy means the world to us.

taken December 2009