Ryan McMahon
 |
Ryan was born with Bilateral Vocal Cord Paralysis - no movement at birth. The doctors at our local hospital never saw or treated Bilateral Vocal Cord Paralysis before and could not determine what or how it was caused. The doctors wanted to put a trach in Ryan - no options, no other forms of treatment. We live just about 90 miles (1 hour) away from Boston Children's Hospital so we had Ryan transferred (three days old). From the moment we stepped into Boston Children's Hospital we knew we were in the best place possible. The only advice that I could give anyone is find the best hospital you can and find a doctor that you feel you can trust.
At Boston Children's Hospital they tried different things for about a week then when all failed we decided to put the trach in. Ryan remained at Children's for another week then we transferred him back to our local hospital for additional training.
We finally went home about a month after Ryan was born. We were very nervous and scared, however; we adjusted and found our way. The one constant throughout was Ryan. Once this little guy started waking up and seeing the world around him he was great. He didn't know any different and it didn't seem to hold him back. The one thing that my wife (Shannon) and I learned was to speak up and ask for help. We had doctors in Boston, specialist in Springfield, nursing at night, early intervention....social workers. We figured what ever it took we would do.
Once a month we would go back to Boston - no real movement on the first two visits, per the doctors notes he didn't believe the trach would come out any time soon, however; he did believe once the airway began to grow there was some chance that we could try when Ryan was 3 - 4 years old. Ryan's vocal cords were paralyzed in an open position - so he could get some air down the airway, just not enough to survive. If the trach was ever removed he probably wouldn't be able to speak.
On the third visit the doctor believed he saw some movement. A week latter we were back at Children's.
Day 1 (Monday) - the doctors viewed his vocal cords and saw movement, as much as 85-90%, however; Ryan did have some scar tissue from the trach and this had to be removed. I really can't remember how long he was in the operating room, but it was longer then the doctors had told us. It failed. They had to put the trach back in. Ryan seemed to have a reaction and swelling occurred in his throat. The good news was the movement of the cords. The doctor gave us the option of staying at Children's for a few days and trying again or going home and coming back after Christmas. We stayed.
Day 2 (Tuesday) - They put a smaller tach in Ryan and gave him medication to reduce the swelling in his throat.
Day 3 (Wednesday) - more medication. That night they plugged Ryan's trach and he did fine.
Day 4 (Thursday) - the trach was removed and Ryan was breathing on his own.
Day 5 (Friday) - Ryan stayed in the hospital one more night.
Day 6 (Saturday) - I took Ryan home. One of the happiest days of my life.
All together the removal took about a week. We still go back to Boston once a month for a checkup. Again, the few words of advice is to find a doctor you feel you can trust and ask for help.
The most frustrating thing was the unknown. We didn't know why or how this happened. My wife and I found it very difficult finding information on Bilateral Vocal Cord Paralysis. I spent days on the internet, local book store and libraries.
 |
Ryan's First Christmas
email: Kevin McMahon
