Our Friend Drayton
The Sherrer family has been wonderful to us. Just a little background...to show you how God puts people into our lives... When we were at UT last fall for Tucker's heart cath, we were amazed by the hospitality of the staff. Just before they took Tucker back, the ant. looked at us and said something to the effect, "I'll take care of him just like he were my own". It truly made a mark on our hearts. As God would have it, he was again there when Tucker came back for his heart cath in March. He said he remembered Tucker, and of course we remembered how he had been so kind before. As soon as he found out about Tucker, he and his wife took time to contact us and offer their support. The amazing thing about this, was that all this was in the midst of their own trying times with their son, Drayton. Drayton doesn't have a website, but I will update as I receive them. His AMAZING story is posted below.
At birth After surgery
As written by his dad:
My son Drayton, he was diagnosed at our routine 20 week anatomy ultrasound with a large neck tumor, called a cervical teratoma. Google it if you want to see what one looks like...they can get to be massive. We moved to Cincinnati when my wife was at 26 weeks. They have you move up there because the babies have to be delivered by a special Csection called an EXIT procedure. They deliver the baby from the waist up only. That way he still gets oxygenated blood from momma, while the surgeons work like mad to establish a breathing tube, either via the mouth, the neck (tracheostomy), or even removing the tumor altogether to facilitate a tracheostomy. All was well until right at 31 weeks. Drayton developed a pleural effusion (I know you know what that is). The next day he had effusions on both sides, and the next day, he had pleural effusions, scalp edema, abdominal edema (ascites), and even scrotal edema. He had developed heart failure in utero (called hydrops fetalis) because his heart was having to send so much blood to the tumor, it just couldn't keep up. We had to do the EXIT procedure waaaay early, and our odds were not good. In fact, they told us the day of surgery that the mortality rate from hydrops at 31 weeks was about 98%, and that didn't even factor in dealing with the tumor later.
At birth After surgery
As written by his dad:
My son Drayton, he was diagnosed at our routine 20 week anatomy ultrasound with a large neck tumor, called a cervical teratoma. Google it if you want to see what one looks like...they can get to be massive. We moved to Cincinnati when my wife was at 26 weeks. They have you move up there because the babies have to be delivered by a special Csection called an EXIT procedure. They deliver the baby from the waist up only. That way he still gets oxygenated blood from momma, while the surgeons work like mad to establish a breathing tube, either via the mouth, the neck (tracheostomy), or even removing the tumor altogether to facilitate a tracheostomy. All was well until right at 31 weeks. Drayton developed a pleural effusion (I know you know what that is). The next day he had effusions on both sides, and the next day, he had pleural effusions, scalp edema, abdominal edema (ascites), and even scrotal edema. He had developed heart failure in utero (called hydrops fetalis) because his heart was having to send so much blood to the tumor, it just couldn't keep up. We had to do the EXIT procedure waaaay early, and our odds were not good. In fact, they told us the day of surgery that the mortality rate from hydrops at 31 weeks was about 98%, and that didn't even factor in dealing with the tumor later.
So, my wife told everyone there that God was going to show off today....and he did. Drayton came out fighting. They intubated him while still attached to my wife Smith (that's her first name...it's her mom's maiden name). They put in chest tubes while still attached. He fought through the hydrops, and the respiratory distress syndrome, and the capillary leak phenomenon, over the next week and had the tumor removed a week after birth. Since that time we have been dealing with the aftermath. He has a paralyzed vocal cord (due to nerve damage in the neck from the tumor), is getting over a paralyzed diaphragm (also nerve damage) that has caused lots of breathing issues, and has undergone a Fundoplication and Gastrostomy feeding tube to prevent acid reflux and provide a means of feeding. All of the above led to about a 5 month stay in the NICU, fortunately 4 months of that was here at UT. He got to go home last week. We are running a mini NICU in our condo, but he is doing well considering. He has avoided a tracheostomy thus far, although it remains a possibility. The hope is that as he grows and matures, all of these problems get better and better. He is most certainly a miracle. The scar from is surgery is almost invisible, and cosmetically, he looks like a handsome 5 month old baby.
Update on 5/12/08
Drayton is doing quite well. The purpose of this email is to inform everyone of his next upcoming surgery, which will be this Friday May 16th in Cincinnati. But first a little background....Drayton's diaphragm has recovered nicely. His breathing is unlabored and comfortable, but sometimes noisy. He has been home from the NICU for about 2 months now and we have not once (knock on wood) had to use our oxygen tank. His breathing still sounds "raspy" at times. This is due to swelling in and around his vocal cords. At our last follow up visit with Dr. Crombleholme (fetal surgery) and Dr. Elluru (ENT), they felt this was not at all unexpected. It is seen not infrequently (fancy medical speak for "sometimes") with teratoma resections. When the tumor is removed, veins and lymphatic vessels often come out with it. Thus, the area that supplies those veins and lymphatics doesn't drain very well, and can swell. Fortunately, veins and lymphatics regrow, but it can take well over a year. Drayton's oxygen saturation is usually in the 96-100% range, which is excellent, but at some point in time nearly every day he drops down into the low 70-80% range. This is usually accompanied by graying of the lips and panicking of the parents, but he always responds to simple head repositioning. All of this is indicative of some degree of narrowing of his airway above the vocal cords.
If all Drayton had was noisy breathing, we'd probably just sit and wait. The veins and lymphatics are likely to regrow in a year or so, so why bother? Since it still causes him trouble, we are going to have a procedure done to try to help out. Dr. Elluru is the ENT who originally intubated Drayton at the time of delivery, which if you'll recall was a major victory at the time. He is going to do laser therapy on Drayton's arytenoids this Friday. The arytenoids are right above the vocal cords, and are the most swollen part of Drayton's throat. Drayton will be under general anesthesia for the procedure, and will stay asleep, intubated, and on a ventilator overnight. The next morning, if all goes well, they will remove the breathing tube. Hopefully we can come home the next day.
The purpose of all of this is simply to make a little more room. As he is right now, Drayton is doing quite well with the above mentioned occasional scares. If he were to get a cold, however, he would likely have to be intubated and placed on a ventilator. He simply has no spare room for any kind of swelling or congestion in his throat. Playing the odds, we just don't see how it is possible to go a year and a half without him getting a cold. So we're going to try to "head this off at the pass" and create a little wiggle room with the laser procedure. The laser therapy helps to adhere the mucosa (outer layer of cells) to the underlying cartilage such that it can't swell as much.
That is the plan, but we've seen all too well what happens when we make plans...
As for Drayton's growth and development, he is now a whopping 14+ pounds. He gets fed via his "mickey button" on his belly. That's the great thing about feeding tubes, there is no skipping a meal because you're fussy...we're gonna power that stuff in there no matter what! As for his swallowing, he gets speech therapy every week, which is really swallowing therapy, and is doing well with that. Some time in the next few months he will have another barium swallow study to assess his progress. If he does well with that we will probably start introducing oral feedings slowly. Once he is adequately fed orally, the feeding tube can slide right out (which it has done inadvertently a few times already). If he were younger than a year old when that came out for good I would be shocked.
Drayton is quite a happy kid. He smiles and coos all the time. Despite only having one functional vocal cord, his voice is getting stronger and stronger. If he wants to wake you up in the middle of the night, he will absolutely do so! This is a big improvement from his first months, as he was almost silent at that time. He plays and flirts and generally is developing like any baby of his age. Whereas before he had problems only looking to one side of his body, he now looks all over the place. They were worried about his ability to "midline", or focus his eyes and hands in front of him, but he is doing this quite well. He gets weekly physical therapy as well, and is holding up his head pretty much on his own now. Not bad for a nearly 7 month old kid who's only really supposed to be nearly 5 months old, and who had a tumor as big as his head removed from his neck just 6.5 months ago!
New Entry 5/17/08
New Entry 5/17/08
Hello,
Here we are again, in the hospital in Cincinnati. Drayton had the procedure to laser his arytenoids yesterday, and that all went well. They didn't have to leave a breathing tube in overnight and he slept reasonably well in the ICU. Today he is ok, but fussy. Now the good news/bad news. Drayton's arytenoids were probably only a small portion of his airway troubles. Dr. Elluru looked further down in Drayton's trachea and found a significant obstruction just above where the trachea divides and heads out to both lungs. Something outside the airway is compressing it. This is known as extrinsic compression. In the past, the upper airway problems were the focus of our efforts, but Dr. Elluru didn't feel right about it, and to her credit neither did Smith. So he investigated further and found something. The question now is "what is it"? I guess the good news of it all is that finally we have a more reasonable answer for his breathing troubles, and something to try to fix.
Rather than coming home tomorrow like we had planned, Drayton will have a CT (formerly call CAT) scan on Monday under anesthesia to evaluate his neck and chest. Specifically, it is a CT angiogram to look at the vessels in his chest. Dr. Elluru is postulating at this time that one of Drayton's major blood vessels was displaced by the teratoma and now resides in an unusual spot, termed an "anomalous" vessel. We of course asked if it could be more or recurrent teratoma, and it was thought to be possible, but unlikely. We are going to get the CT scan, see exactly what it is, then decide what to do. It is possible, if not likely, that Drayton has more surgery in his near future. The findings of the CT scan will be discussed with Dr. Crombleholme (Drayton's fetal surgeon) and also with the head of Cardiothoracic Surgery, Dr. Manning.
I've attached the bronchoscopy picture above to show just how much his trachea is occluded. The pic on the left is higher up in the trachea, and looks appropriate. The pic on the right is just above the carina (where the trachea splits) and is significantly occluded (Smith says "squished"). We are extraordinarily grateful that this hasn't caused total airway obstruction, which would be disastrous.
We have no idea what we're going to do about all of this, but we do know that we are in the right place to have it addressed. We've trusted the instincts of the physicians here in the past, and they have led us to the problem, so we have to trust that they will make the right decisions henceforth.
Thanks for all of the prayers and support, Smith and I are grateful to each of you. We are going to pray that the docs and nurses, and we as parents, continue to receive the guidance from above to make the right calls.
Update: June 16th, 2008
Drayton and family are home now, after a LONG stay in Ohio. He has had to use some oxygen since coming home, hopefully a transitional adjustment. Drayton has amazing parents, who are doing an amazing job. Right now it's important that little man isn't exposed to sickness or the germs that lurk about. Prevention sometimes means somewhat isolation, which can be trying on mom, dad and especially big brother. Say a prayer for them that Drayton will continue to recover and enjoy the full and healthy life that he deserves. He is truly a miracle.
Update: June 16th, 2008
Drayton and family are home now, after a LONG stay in Ohio. He has had to use some oxygen since coming home, hopefully a transitional adjustment. Drayton has amazing parents, who are doing an amazing job. Right now it's important that little man isn't exposed to sickness or the germs that lurk about. Prevention sometimes means somewhat isolation, which can be trying on mom, dad and especially big brother. Say a prayer for them that Drayton will continue to recover and enjoy the full and healthy life that he deserves. He is truly a miracle.
That's great. I hope other hospitals around the country follow suit.
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