Carson McClain
 |
Carson was born on 7/4/01 by C-Section. He was having trouble breathing due to his small lower jaw pushing his
tongue over his airway. The next day, they diagnosed him with Pierre Robin Sequence and transported us to Medical City Dallas. There we met a team of doctors and Carson had his first surgery to place a G-tube on 7/11/01. Carson came home on the 20th and made until the 31st when his monitor started going off. He then turned blue and back to the hospital for us. Our craniofacial surgeon recommended jaw distraction surgery to move his
tongue out of the way. Carson was on a vent from 8/3 to 8/15 and was extubated. He stayed in the hospital another seven days and we were discharged. The night we went home (8/22), Carson started having trouble breathing and the next morning we went back to the hospital. An ENT was called in an after a flexible bronchoscopy, he was diagnosed as having edema of the subglottic region and the epiglottis. He was put on decadron and heliox for two days. He appeared to improve and again we were discharged on 8/31. The night he came home was uneventful, however, the next day, when he would cry he had trouble breathing. It was horrible to watch. But then, he would sleep and seem alright. Finally, we went back to the hospital and he was reintubated after turning blue in the PICU. He was trach'd on September 5, 2001.
Since then, he has been diagnosed with reflux and the doctors felt the reflux caused the breathing issues. We have had many diagnostic procedures performed and he is taking prilosec. We had a full bronchoscopy on November 26, 2001, after two unsuccessful decannulation attempts, which revealed tracheomalacia. The reflux appeared to be under control.
Carson had his palate repaired on January 31, 2002 and we had the ENT scope his airway. This time, the bronch revealed subglottic stenosis and edema as well as edema of the epiglottis. The edema and stenosis was due to reflux.
Carson will now have nissen surgery on Feb. 12, 2002. Hopefully, his stenosis will resolve some once the reflux is controlled, however, I think that is just wishful thinking. Only time will tell.
Other than the airway problem, Carson is a very happy, healthy baby. He loves to be held and likes to play with his stuffed animals.
 |
Update, April 2002 - On April 9th and 10th we took Carson to see Dr. Cotton and his team. On Tuesday we met with the feeding team and learned that Carson is doing rather well at eating. Then we met with a geneticist and learned that it is possible that Carson has Stickler Syndrome, although they can't be sure unless he shows symptoms.
On the 10th, Dr. Cotton did a bronch that revealed a subglottic stenosis that he estimated to be a grade III. In addition, Carson's airway lies very anterior and he will not be able to have reconstructive surgery until he grows and the soft tissue above his epiglottis moves forward. (apparently this is not uncommon with PRS kids). Dr. Cotton feels that there is too great of a chance that he will not be able to decannulate him until he gets a little more room. So, we have to wait until he is three to four years old for surgery. In Dr. Cotton's opinion, the stenosis was secondary to intubation.
On the bright side, Dr. Cotton told us that Carson was an excellent candidate for the LTP surgery and that he would prefer to do a single stage procedure when the time is right. We go back in a year for another bronch and see where we stand at that time.
Oh, Carson just started crawling!!!!!!
 |
Update - January 2003: Since last April, Carson has made some real progress. After alot of work, he now eats really well. In fact, he eats all the time. Although he can drink with a sippy cup, he doesn't really like milk, which we make sure he gets via g-tube. We stopped going to the OT for feeding therapy and have started to see a speech therapist. They have not done alot to this point since Carson is babbling alot and trying to speak. He is starting to fall behind in this area now. He is learning to sign though and is doing around 10 signs and shakes his head yes or no to tell you what he wants. He can say mama and dada which makes us pretty happy!
In October 2002, Carson had the fistula in his palate repaired (bloody surgery) and ear tubes replaced in both ears. In addition, the also did a bronch. The two surgeries were successful and the bronch did not reveal anything new *yeah*, however, the local ENT did think it was still too soon to attempt
an LTP. He said that Carson was borderline ready and the conservative thing to do is wait....
So here we are... We go back to Cincinnati in April to have Dr. Cotton scope him and see if he is ready for reconstruction..... The saga continues!
UPDATE - Monday, May 19, 2003 @ 11:00am: Today, Carson underwent single-stage LTP surgery to correct his subglottic stenosis. Since his stenosis was a Cotton-Meyer Grade III (90%+), they had to place both anterior and posterior rib cartilage grafts. The surgery itself took five hours and Carson was taken to the PICU on a ventilator. He remained sedated and on the ventilator until Wednesday, May 28, 2003, when he was taken back to the OR for a bronchoscopy. Since the scope looked good, they placed a smaller ET tube and returned him to the ICU for one more night. On Thursday, May 29, 2003, they turned off the sedation at 8:00am and around 9:45 he started to rouse. Once he was pretty fired up, the respiratory therapist, a couple doctors and a couple nurses all came in and extubated him. At 10:10am, Carson breathed normally for the first time in 20 months. He was pretty raspy for a while and slowly improved as the day went on. He did require a round of decadron (steroids) and two racemic epinepherine treatments. On June 6th, he had a follow up bronch, which Dr. Cotton said "his airway looks great" and the grafts had already healed over. After that we had to stay around a couple days for pulmonary to do a sleep study.... We have been home since June 10, 2003 and Carson is doing well. So far, no breathing issues and I hope it stays that way. We go back to OH for a follow up scope July 9th.
 |
Update: July 9, 2003 - Carson, Michele and I made the trip from Dallas to Cincinnati for our one month follow up and bronch. The bronch lasted about 20 minutes and we were told that Carson's airway looked as good as they could want it to. No granulation, the grafts are fully mucosalised and you could see the capillaries running through them. They sized his airway with the same size ETT that was used to stent him during recovery and the tube went in with a good airleak. This indicated that his trachea had not scarred down at all since surgery. We go back in six months.
Thanks for all the support from everyone on this site.
