3:10pm
The Baltimore trip was a success! Taylor met with Dr. Byrne yesterday in Baltimore. He has approved doing surgery, and we'll get it scheduled sometime in June - pending approval from the insurance company.
In addition to the surgery to help restore his smile, the Doctor will do some additional tweaking to help with facial symmetry. Taylor's left lower eyelid will be lifted so that the eye opening is the same size. This will also help protect his eye some. His inability to squint his eye really aggravates him sometime. Over the weekend in Washington, it was pretty cold and windy on Saturday. Because he can't squint his eye, the constant wind blowing really irritated it. The left eyebrow will also be lifted. As he ages, he'll have to get more procedures to keep pace with the right side.
The surgery is expected to take about 7 hours. Taylor will be in the hospital overnight and will stay in Baltimore for a week. There will be a lot of swelling, and there 1 in 15 chance for infection, based on the 30 previous procedures that have been done. Fortunately, his mother has a cousin in Baltimore so he'll have a comfortable place to recover instead of being in a hotel room for a week.
Taylor has an appointment on April 10th with the eye surgeon in Tampa. Hopefully, he'll find out if the new eyeglass lense he's using has aligned his left eye. If so, then surgery will likely happen this summer.
Tuesday, March 24, 2009
Thursday, March 12, 2009
Baltimore Bound!
4:15 pm
It's set up. Taylor has an appointment on Monday, March 23rd to see the Doctor at John Hopkins. The Doctor will likely make a final determination then about the surgery.
We found some stupid cheap tickets on Allegiant Air that will allow all of us to go. Flights are only on Monday and Friday, so we'll go up Friday and hang out in Washington DC until his appointment Monday afternoon.
This is one of the big moments. If they do the surgery and if it's as successful as the others have been, this trip puts him 1 step closer to getting his smile back.
Monday, March 9, 2009
Johns Hopkins Tentatively Approves Surgery!!!
11:00 PM
The last option is the one we had heard about from the Doctor at Shands in Gainesville. The surgery is a couple of hours and he'd be in the hospital overnight. The smile is about 1/2 the size of that created with the leg muscle, but it's a lot less invasive. Once completed, the results are immediate. The smile won't be automatic. He will have to learn how to "train" the muscle to smile by gritting his back teeth together, which will trigger the muscle to activate the paralyzed side of his mouth. Initially, when he deliberately wants to smile, he'll have to remember to trigger the muscle. But the Doctor said over time the brain will eventually know that when it's time to smile it will signal him to grit his back teeth and cause him to smile.
Last night we learned that Taylor appears to be a good candidate for the facial reanimation surgery.
While I was driving back from Tampa, Suzie was at home and Taylor at a friend's house, the Surgeon conferenced us all together and explained the 3 options available.
One involves cross matching nerves from the unaffected side of his face to the paralyzed side. But, since testing at Shands showed the nerves on the paralyzed side are essentially dead, that procedure isn't an option. The second one is to harvest a muscle from the leg and attach it to nerves and tendons in the face. Although it tends to create a bigger smile, it takes up to a year for it to start working. Because of the size of the muscle, there would likely be a bulge in his cheek. His hospital stay would be about a week, and it's about an 8 hour surgery.
The last option is the one we had heard about from the Doctor at Shands in Gainesville. The surgery is a couple of hours and he'd be in the hospital overnight. The smile is about 1/2 the size of that created with the leg muscle, but it's a lot less invasive. Once completed, the results are immediate. The smile won't be automatic. He will have to learn how to "train" the muscle to smile by gritting his back teeth together, which will trigger the muscle to activate the paralyzed side of his mouth. Initially, when he deliberately wants to smile, he'll have to remember to trigger the muscle. But the Doctor said over time the brain will eventually know that when it's time to smile it will signal him to grit his back teeth and cause him to smile.
He said most patients choose the third option, and all have been very pleased with the results. There have been no bad outcomes, and all have worked. Only two patients have had any complications, and they've done about 30 of the procedures so far.
This Doctor reminded us what the Doctor in Shands told us - that Taylor will have other surgical procedures in the years ahead as he ages. The biggest concern will be just below his eye. That will begin to droop causing his eye to dry out while sleeping that can lead to scratching of the cornea of the eye. For the rest of his life, he will continue to see a Surgeon who will monitor changes in his facial tone in order to make adjustments.
We don't know the insurance future with regard to those procedures. On his birthday later this year, he'll no longer be on our insurance policy. When he gets his own policy and they find out what happens, there may be some real issues getting him insured. For now, we're concentrating on getting everything done while the insurance holds out.
If he gets the final approval from Johns Hopkins, he'll be in a very small fraternity of people with facial paralysis who have been given back the ability to smile. We've really missed seeing Taylor's full smile and pray that he'll get the final approval for the surgery and it will be a success.
Taylor will have to go to Baltimore to be examined in person before they make a final decision, but so far it looks really good for him. He's very excited about the prospect of getting back some of the smile that he's lost.
Saturday, March 7, 2009
More vision testing
6:45 am
The eye surgeon did some additional testing yesterday and everything looks good for the surgery. We're waiting on the delivery of the plastic that will be added to one of his glass lenses to tweak the prescription to see if his eyes can be lined up with glasses. If so, the Dr. will do the surgery.
For some reason, his vision is no longer 20/20. The Dr. said it was peculiar that his testing would be so different 2 weeks apart but thought maybe they just hadn't adjusted after some of the other testing he did prior to the vision test.
We've still not heard from Johns Hopkins yet but I sent and email early this morning to see if I can find out if Taylor's case has been reviewed yet.
For some reason, his vision is no longer 20/20. The Dr. said it was peculiar that his testing would be so different 2 weeks apart but thought maybe they just hadn't adjusted after some of the other testing he did prior to the vision test.
We've still not heard from Johns Hopkins yet but I sent and email early this morning to see if I can find out if Taylor's case has been reviewed yet.
Sunday, March 1, 2009
The Second Anniversary
2:14 PM
Today is the second anniversary of Taylor's accident. It will pass without too much fanfare, but the past two years will certainly be on our minds all day.
There is an awful lot we've all learned in the past 2 year.s We learned that miracles DO happen. There were several instances where if things had gone the other way, the outcome would likely be very different - in a really bad way. If Connell Waldron hadn't caught a glimpse of the reflector on Taylor's car, he'd have no reason to stop and find Taylor on the side of the road. Other cars had passed without seeing Taylor's wrecked car. Initially, the helicopter pilot reported the fog was too bad for him to fly. Had he not decided 10 minutes later to make a run for it, the delay in getting Taylor to the hospital by ambulance may have changed the outcome. There are two examples that happened just in the first 30 minutes.
There are several other potential "life or death" situations that came up and each time it went in Taylor's favor. We have no doubt that these events weren't a series of odd coincidences, but that God had responded to the many prayers said for Taylor by friends and family all around the country. He was on prayer lists at churches in places we had never heard of.
Also tying for one of the top spots on the "Things We Learned" list are those in the medical profession who cared for Taylor. They not only kept him alive and helped him get better, but they comforted us and gave us hope at times when we were really scared of what the next hour may bring. They took care of Taylor like he was their own. They are people that you hope you never have to deal with professionally, but once you spend as much time with them as we did you recognize what amazing people they all are.
We learned what a huge difference friends can make at a time like that. We had friends that put parts of their lives on hold to help guide us through the nightmare we were living. Just having friends with us was a huge comfort. And, we REALLY needed comforting. During the critical times, everything would have been so much harder for us had our friends not been there to do all they did. Both our friends and Taylor's friends taught us a valuable lesson about friendship, and how important it is to be there at a time like that. So many did so much for us. We hope nothing ever happens to any of our friends families like what we experienced, but if it does we've learned just what to do to help make their lives a little more comfortable.
One of the more depressing things we learned is what happens to some patients who are in the situation Taylor was in. We heard stories from Nurses about patients - including children - who are hospitalized with life threatening injuries but the parents were not bedside. They'd check in after work sometimes, but there were days when they didn't do that. There was one man at the brain injury rehabilitation center where Taylor lived for 3 months who suffered a brain injury after being the victim of a crime. It wasn't long before I noticed this man never had any visitors. The Nurse told me he was from Miami, had a wife and kids, but no one had been to see him in the 10 months he had been there. It was apparent that this man would not likely be able to live on his own again, and will probably spend the rest of his life in a facility of some sort. How sad that all it took was an injury for his family to abandon him.
Taylor's mother and I have been in professions for the past 30+ years that caused us to meet other parents who lost a child or had one critically injured. We talked on occasion about those families, how how incredibly difficult it must have been for them. We had no idea until March 1, 2007 just how difficult it really is. It was much worse than I ever imagined. But, at least we got to bring Taylor home and many were not as fortunate.
It has, of course, been the most difficult for Taylor. I know he'd like his hearing and vision back to the way it was, to be able to throw a ball or run around the block. Although he doesn't say so, the facial paralysis certainly bothers him. But through it all he has shown determination and strength beyond anything I've ever seen before. He has accepted that the upcoming surgeries may not work, and there may not be any more improvements. He's ok with that. He said he doesn't worry about those things because "There is nothing I can do to change it".
The past 2 years have changed all of us in a lot of ways. Taylor has recognized he was given a second chance and he's taking advantage of it. School is now his top priority and his GPA proves it. He got about as close to death as one can get and still make it back in good shape.
While we realize that today could be the last day on earth for any member of our family, it's much more of a reality to us than it was before. So it's particularly painful for us to hear of families that have troubles, where kids are "kicked out" of their homes or tensions develop to the point that some family members don't speak to one another. Had they been along with us for the past 2 years, they'd quickly realize that there is nothing - or should be nothing - so important that it should ever interfere with family. And, they'd probably realize just how petty the issues that caused the problem really are. This event has certainly created even a stronger bond in our family.
There are several other potential "life or death" situations that came up and each time it went in Taylor's favor. We have no doubt that these events weren't a series of odd coincidences, but that God had responded to the many prayers said for Taylor by friends and family all around the country. He was on prayer lists at churches in places we had never heard of.
Also tying for one of the top spots on the "Things We Learned" list are those in the medical profession who cared for Taylor. They not only kept him alive and helped him get better, but they comforted us and gave us hope at times when we were really scared of what the next hour may bring. They took care of Taylor like he was their own. They are people that you hope you never have to deal with professionally, but once you spend as much time with them as we did you recognize what amazing people they all are.
We learned what a huge difference friends can make at a time like that. We had friends that put parts of their lives on hold to help guide us through the nightmare we were living. Just having friends with us was a huge comfort. And, we REALLY needed comforting. During the critical times, everything would have been so much harder for us had our friends not been there to do all they did. Both our friends and Taylor's friends taught us a valuable lesson about friendship, and how important it is to be there at a time like that. So many did so much for us. We hope nothing ever happens to any of our friends families like what we experienced, but if it does we've learned just what to do to help make their lives a little more comfortable.
One of the more depressing things we learned is what happens to some patients who are in the situation Taylor was in. We heard stories from Nurses about patients - including children - who are hospitalized with life threatening injuries but the parents were not bedside. They'd check in after work sometimes, but there were days when they didn't do that. There was one man at the brain injury rehabilitation center where Taylor lived for 3 months who suffered a brain injury after being the victim of a crime. It wasn't long before I noticed this man never had any visitors. The Nurse told me he was from Miami, had a wife and kids, but no one had been to see him in the 10 months he had been there. It was apparent that this man would not likely be able to live on his own again, and will probably spend the rest of his life in a facility of some sort. How sad that all it took was an injury for his family to abandon him.
Taylor's mother and I have been in professions for the past 30+ years that caused us to meet other parents who lost a child or had one critically injured. We talked on occasion about those families, how how incredibly difficult it must have been for them. We had no idea until March 1, 2007 just how difficult it really is. It was much worse than I ever imagined. But, at least we got to bring Taylor home and many were not as fortunate.
It has, of course, been the most difficult for Taylor. I know he'd like his hearing and vision back to the way it was, to be able to throw a ball or run around the block. Although he doesn't say so, the facial paralysis certainly bothers him. But through it all he has shown determination and strength beyond anything I've ever seen before. He has accepted that the upcoming surgeries may not work, and there may not be any more improvements. He's ok with that. He said he doesn't worry about those things because "There is nothing I can do to change it".
The past 2 years have changed all of us in a lot of ways. Taylor has recognized he was given a second chance and he's taking advantage of it. School is now his top priority and his GPA proves it. He got about as close to death as one can get and still make it back in good shape.
While we realize that today could be the last day on earth for any member of our family, it's much more of a reality to us than it was before. So it's particularly painful for us to hear of families that have troubles, where kids are "kicked out" of their homes or tensions develop to the point that some family members don't speak to one another. Had they been along with us for the past 2 years, they'd quickly realize that there is nothing - or should be nothing - so important that it should ever interfere with family. And, they'd probably realize just how petty the issues that caused the problem really are. This event has certainly created even a stronger bond in our family.
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