Surgery #11

So on Tuesday morning we woke up around 4:45am and headed to the U of U burn center.  For some reason that morning I just wanted to pick him up and drive him anywhere except there.  I thought I should take him to Las Vegas and we could go on vacation or head to California.  I just wanted to be anywhere but there.  I was so anxious because I knew this surgery was going to be awful and hard and I had been praying for strength so I could help Tayton get through this.

So I took him despite not wanting too.  His surgery lasted about 4 hours.  The ENT, Dr. Marshall Smith was going to do an airway surgery again, but when he looked in there Taytons airway was the biggest it has ever been!!!!!!!  For the first time ever we had a positive outcome with the airway surgery.  His airway is still really small, the size of an infants.  When Tayton was first burned they had a size 6 tube in, his first airway surgery it was like a 2.5 or 3.  So his airway was smaller then half the size.  The largest we ever got in his airway was a 3.5.  Well on Tuesday they got a 4 in and there was a tiny leak.  I was thrilled.  So Dr. Smith just said I'm not going to work on him I think he is stable for now, but eventually we need to do the post-terrior cricoid graft surgery.  It is another major surgery but we can wait a while before we have to do that surgery.

The Dr. Morris came out a few hours later and told me Tayton did great.  His vitals stayed good the entire time and he handled it great.  He cut all of Taytons scar tissues out and put cadaver skin over.  The reason why they put cadaver skin on is because of all the infections Tayton has been having.  Last week we were in the ER twice draining infections out of his arms.  So they were afraid if they put his skin on it wouldn't take and they would just waste it.

He was in so much pain that night and was just screaming that it was too much.  It was so hard, I wish I could have taken it from him.  I felt so helpless.  He was on some major pain medication and he couldn't have any more.  A few hours later he settled down and was able to have a great nights sleep.  Here is is the first day.

 Here he is on the second day, getting more color.  I think here we found a good balance with the pain and sedation medications.

 Yesterday was actually kind of a fun day.  He was able to get out of bed and walk around.  Then I took him outside for a picnic lunch.  Then we took the wagon to the front doors and waited for Tanna and Blakeli to come visit.  It was nice to have everyone together.

 Then there was this morning.  They had to do a deep sedation when they took the bandages off.  I am glad because he won't remember what they looked like.  I took pictures of his arms and hands but they are too hard for me to look at.  I have seen a lot to.  The doctor said they looked exactly how they wanted them to look, nice and pink and the cadaver skin attached to him.  Here is my poor boy sedated.  He was seeing double at one time.  It only lasted about a half hour and then he was feeling so much better.   I thought I knew what to expect but because his scars were so deep there were huge holes in his arms.  I thought it would be pretty even but it looks like something took a huge bite out of his arms and hands.

So he will have his next surgery Mon or Tues.  They will go in, remove the cadaver skin and put a silicone lining called integra on.  The integra should help with his skin attaching, it should help make it not scar as bad, and should help it not be as tight.  It can still get infected so we have to watch for that but things have been better this time around so I am hoping we have no complications.  So after the integra is on we have to wait 7 - 10 days then they will finally be able to graft his own skin on then we will stay at the burn unit a few more weeks then we should be able to go home.  We will be in the hospital over a month.

This time around things have been different.  Some things are so much better.  I love that this time he can communicate and tell me what the problem is.  I love that he isn't as sick.  He isn't on a ventilator keeping him alive.  He is only recovering from the surgery and not from the burns.  I love the new burn unit.  The rooms are huge and I love having a window in every room.  I love having a shower, bathroom, and bed in his room so I don't have to leave.  They have a refrigerator so I don't have to eat every meal eating cafeteria food.  The only thing I don't like this time around is seeing him in pain.  He doesn't really remember much of the first time around because he was in a coma for most of the painful parts.  It is still hard seeing other patients.  It brings back so many horrific memories.  I try to talk to some of them but then they ask me why I am here.  I hate telling them that my son was burned 17 months ago and we are back doing skin grafts.  They keep asking me what recovery is like and I hate telling them Taytons story.  Most burn patients haven't had 11 surgeries in 17 months.  Most don't have to go back for the skin grafts to be re done.  But at the same time I don't want to lie to them and say things are going to be easy, because with any burn the recovery is long and hard.

Also he is so bored.  I had a bunch of things for him to do.  I had lego sets, coloring books, games, and lots of little toys but he can't use his hands.  They are so bandaged up.  He can't even feed himself and he isn't even allowed to move a finger.  So I found tv and movies are great but I don't want him to watch all day.  We read a little and worked on things from his scout book.  I really don't know what else I can do with him until he can use his hands.

I don't know when I will be home again to blog but I post every day on facebook.  Hopefully he will improve each day and each surgery he will get better and better.