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TrachKid Profile

Peter was born full term on Aug. 8 2009 weighing 7lbs 11ounces. He exhibited sever stridor immediately and after few minutes was taken from the delivery room to the NICU. After a few hours my wife and I were allowed to join him. At the time he seemed better, although he still squeaked and his chest retracted when breathing. We were told that it was just stridor and that lots of kids have it and it usually goes away within a few hours or a day at most. After 2 days the pediatrician decided to have him transfered across town to another hospital where he could be evaluated by a ENT. So my wife and I headed across town and our 3 day old son was taken in an incubation chamber via ambulance. At the next hospital we waited for about 8 hours in a PICU before he was scoped. The Dr. diagnosed him with Bilateral Vocal Chord Paralysis and later that night he was intubated to help him breath. We spent a few days in the NICU while they ran tests on Peter trying to establish a underlying cause for the BVCP, but there was none. We were told that in situations like Peter's usually a tracheotomy is required. After 2 more days, he was taken in for a final scope and trached. We spent another 3 weeks in the hospital and were finally released with Peter. Our caseworker was amazing, she evaluated how we were doing caring for him and determined that we would be ok to take him home while we waited for Medicaid approval for home nursing. Inside of about 3 days she managed to get us all the equipment and supplies we would need for the first few weeks and got us on our way home.

Peter has been home for a little over 3 weeks as I write this. He had a little trouble gaining weight at first but once we got him on a tighter feeding schedule he started gaining weight. He's now pushing 9lbs and looks great!

As with most of the folks on here with a similar diagnosis to Peter's, we were told 2-3 years for a recovery time. Today my wife took Peter in for his first follow up with the ENT. My day at work was interrupted with a call from her saying that I had better take tomorrow off, they are going to try and remove his trach. Apparently Peter regained nearly normal vocal cord movement. For all the folks on here who have yet to hear those words, brace yourselves and thank you. After his diagnosis, I did what any parent would do and started searching the net looking for info. I stumbled upon this site and it was you all who gave me the strength needed to get my family through this, the courage to face the obstacles that laid ahead of me, and the hope I needed for my son's future.

While we are not out of the woods yet, I am very hopeful for tomorrow. I will post more when I know more. Thank you ALL again.

Status Update (by Peter):
Daddy is too excited to type, so I guess I'll up date you all as to what happened.
I woke up yesterday and did my normal routine, eat, bath, diaper change and Mommy played with that thingy on my neck. I couldn't fgure out why she kept smiling the whole time or why Daddy was home. After it was all done we got to go for a car ride, but those tricky jerks took me back to see the people with the blue masks! Then they took me away from mommy and daddy...it was scary, last time they took me away is when they put the plastic thingy in my neck. A strange lady put something over my mouth and I got really tired, so I decided to take a quick nap. When I woke up mommy and daddy were back! Daddy was smiling and mommy was crying and kissing me. It was all really confusing and I got a little upset suddenly there was this really loud noise I'm not sure what it was but, it came from me! So I tried again and sure enough, it was me! I had a new power, I think the lady in blue with the light on her head cast a spell over me. I now have the ability to make all sorts of noises and they even took the plastic thingy out of my neck! I'm still in the hospital, which is fun because all the nurses keeping comming by and picking me up and laughing and smiling. Anyway daddy wanted me to tell all the other kids on this sight to be strong and not be scared of the people that daddy and mommy call doctors, because maybe they'll give you super powers too! Now, if you'll excuse me, I have found that I can use my powers to make mommy bring me food!

• Gender: Male
• Demographic Region: North America
• Siblings: One
• Medical Conditions: vocal cord paralysis
• Ethnicity: Caucasian

History

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Member for

2 years 18 weeks

Location

Country

United States

State/Province

New York