Jaden Robert Revell
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3 years old
My son Jaden was born August 3rd, 2001 at 26 weeks gestation. He weighed 2 pounds 5 ounces. My daughter Haley (who is 18 months older) was born at 31 weeks. We were told it was a fluke thing that she came into the world early, so I was optimistic that we would be able to have a full term pregnancy the second time. We were wrong and this time Jaden decided to come even earlier.
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2 days old
He did really good initially, came off of the vent at 3 days old and was put on nasal C- pap. But unfortunately after a week they discovered his duct in his heart was not closing, they tried medication first but it didn’t work so they did a PDA ligation. Everything went fine with the surgery, but when they attempted to get him back off the vent 2 days later, he struggled to breathe on his own and they had to intibate him again. They said his lungs probably just needed the help a little longer. To make a long story short, over the next month they extebated and reintibated him a total of 6 times. Finally an ENT specialist was brought in to do a bronchoscopy. That was done on September 11, 2001, of course I will never forget that date. It seemed that he had good news, his vocal cords were moving and his airway just looked a little swollen and inflamed. He was started on steroids in hopes of making the swelling go down enough for him to be able to breathe on his own. He was extebated and reintibated 5 more times over the next month. Each time they tried to extebate him, he would struggle more and more until, eventually it got to be as soon as they took the ET tube out he was in trouble. It was so scary to watch him struggle just to get a breath. I just wanted him to be able to breathe easy.
Finally, he was transported to Iowa City from Methodist Hospital in Des Moines. Their ENT’s plan was to do a bronch and make sure his vocal cords were moving. If they were, he was going to do a Cricoid Split. And if they weren’t moving he was going to perform a tracheostomy. When they did the bronch, they said his vocal cords were not moving and performed a tracheostomy. His diagnosis was subglottic stenosis and vocal cord paralysis. It was so scary to see my tiny baby with this horrible hole in his neck, but I knew it was what we had to do to get him home. After a couple weeks, he was transferred back to Methodist in Des Moines where he would spend another 2 months learning how to eat from a bottle. On December 23, 2001 we finally were able to bring our baby home. He was almost 5 months old and weighed over 12 pounds.
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4 ½ months old day he came home
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Jaden 16 months old with sister Haley
We have nurses in our home 10 hours a day so that we can go to work. He has done so well with the trach and is growing up so quickly, hitting his milestone a little behind, but hitting them all other than speaking. When Jaden was about 15 months old we decided that we needed another opinion on his airway. The doctor in Iowa City originally had told us he would need the trach from 4 months to 2 years, but was no longer giving us as positive of an outlook. We decided to go to the Mayo Clinic in Rochester, Minnesota. We saw Doctor Thompson and were immediately impressed. She felt confident that she would be able to get his trach out, but warned us it could be a long road.
After numerous tests and procedures over the next few months, his first reconstructive surgery was performed in July of 2003. His part of his trachea that was completely closed off was resected out, and the two open ends were then sewn back together. An ET tube was placed through his nose and he was kept in a drug induced coma for two weeks. It was so scary to see him completely out of it, but we knew the more still he was kept the better the chances were that the surgery would be successful. It was so awesome to see his neck without a trach there. It looked so good. Unfortunately when it came time to extebate him, he had problems breathing. At first they thought maybe he was just panicky, trying to breath in a way he wasn’t used to. But after about 20 minutes, they decided to take him back down to the O.R. to see what was going on. They discovered that his repair had come undone due to an infection in his trachea. We were devastated. I felt so guilty that we had put him through the surgery for nothing. The worst part was yet to come. Over the next several days, he went through horrible drug withdrawal from all the medications that they used to keep him sedated during the past two weeks. I don’t think that there is any way for a parent to prepare for something like this. After two weeks, he was able to come home, still on Methodone, Valium, and Clonodine for his withdrawal symptoms. It took another month at home to finally get him back to his regular self. He had to relearn how to sit up, crawl and walk.
We decided to try it again July of 2004. This time Dr. Thompson wanted to do the reconstruction in stages. She did basically the same surgery, only this time instead of keeping him asleep while he recovered, he was able to wake up and had a Montgomery T-tube placed instead of a trach. The T-tube goes down in the trachea and also goes up through the vocal cords acting as a stent while the surgery could heal. The bad thing about the t-tube was that he wasn’t allowed to eat because of the possibility of aspiration. He was pretty good about being completely G-tube fed and only got upset a couple of times, he’s such a trooper. In October of 2004 the t-tube was removed and replaced with a trach. Two weeks later we went back for a bronchoscopy to see how the airway looked. Bad news again, the airway looked swollen and the T-tube would have to be put back in. When she went in to place the t-tube back in, Dr. Thompson discovered it wasn’t as bad as she had originally thought, and the part of the airway that had originally been repaired still looked good, it was just above that area that had basically collapsed. She decided to do a rib graft for that area and replace the t-tube.
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Jaden, Haley and Dad July 2004
So that’s basically where we are at right now. He currently still has the t-tube and we now have a date that it will be removed. April 18, 2005 is the big day. After the t-tube is removed, he will have a trach put back in to make sure his airway is sufficient. I have a very good feeling this time, he is now 3 ½ years old and he is ready to be rid of this! He attends a special needs pre-school and will go to a regular one next year. He knows quite a bit of sign language and has recently started to whisper some words. He is such an inspiration to us and we are so proud of him. I can’t wait to finally be able to hear his sweet voice.
