Surgery #12

On Tuesday, April 22, Tayton went in for surgery #12.  (I am putting the dates so that way when I have to feel out medical forms if I ever need to find dates of surgeries I can look back.)  This time they went in, took off the cadaver skin, and put the silicone lining called Integra on.  He did really good except coming out of anesthesia.  He was having a hard time breathing.  They called respiratory therapy up and did some breathing treatments on him.  I was thrilled because last week when he had surgery #11 the ENT said his airways was bigger then it has ever been.  Well Dr. Morris said the 8 month old baby in the burn unit had a bigger airway.  She had a size 4 ventilator tube and Tayton was still at a 3.5.  So I was pretty sad knowing that my almost 9 year old son has about a 6 month olds airway.

He had to be on oxygen for quite a while and they had the nurses watch him extremely close, but just like he always does, my little guy pulled through.  He was pretty tired and slept most of the time for the next two days but he improved and was back to riding his little trike again.

Then on Friday it was time to unwrap the bandages and see what his arms look like.  So everyone gowns up, and all the bad memories come flooding back.  Oh how I hate wound care.

 Here is his right hand.  Looks much better without the cadaver skin on.

 Here is leftie.  Apparently this is as close to perfect as you can get with the Integra.  Looks pretty crazy to me.

 So since it looked so good, Doctor Morris said I would be able to take him home if I promise to give him the medication every 4 hours to his arms and hands, keep his bandages on, and don't let anyone bump his arms.  We have to go every three days to change his bandages and tomorrow is our first apt. at the outpatient clinic.  Tayton was thrilled and it was so cute when I told him we were going home.  He said "I didn't even know it was something I could cross my fingers for."

Originally Dr. Morris told us that we would need to stay in the hospital over an entire month and he wouldn't let us go home because if he does bump it it could ruin the entire surgery and he would have to start over with the cadaver skin surgery.  There were talks of maybe letting us go to the Ronald McDonald house for a few days in between but never going home.  I am so happy to be home and so is Tayton.  It is nice to have everyone together.  I love being able to see my girls and sleep next to my husband.   I have been really good at the medication, I'm not letting him go anywhere but the hard part is he is so itchy and tries to itch it and it is slowly taking the bandages off.  It is always a battle but I think he knows how important it is and he doesn't want to go back and be in the burn unit.

His next surgery is May 6th, so if things continue to go good he will be home for his birthday!  I am so happy.  So after surgery depending on how things go, he will be in the hospital another week or two.  Here are some fun pictures of what we have been doing in the hospital the past week.

 Easter morning, he was thrilled to have the Easter bunny ears on.   But when you can't use your hands there is not much you can do about it.

 I took him out on the hospital grounds and hid some eggs around for him.  Bad idea to put them in the dirt.  He tried to pick them up but it didn't work with the huge bandages.

 So finally he would just point then I would go pick them up and put them in the basket.

The hardest part about this surgery, I think, is he is sooooooooooo bored.  I brought lots of fun things for him to do but I didn't realize he wouldn't be able to use his hands.  You can only watch so much tv/movies.  So we had fun putting his Lego sets together.  He would find the pieces and move them over to me.  He would read the instructions and just tell me where to put them.  We made a pretty great team!

So overall things are going pretty good.  I feel so blessed to be home.  It still breaks my heart for all the patients at the burn unit.  It is hard to seem them go through it.  It brings it all back.  But at the same time it makes me appreciative that we aren't back at that stage.  He is improving every day and hopefully we can get his skin back on and that surgery will go well.  Thanks for all the support.

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.

Birthday Girl!

Can you believe my baby girl is all ready one?  That went by so fast.  When I went into the hospital to have her I had an emotion breakdown.  I knew Tayton was going to be having a surgery a few weeks after I had her and my life was so crazy at the time I didn't know how I was ever going to take care of Tayton and a new baby.  I was so worried.  But right when I saw her I was so in love!  This little girl has brought so much joy and happiness into our lives.  She came to our family when we needed her the most.  We were in a dark place and she was the light we needed.

 Every year on my kids 1st birthday I make them their own special cake.  They get to dive into it.  My cake turned out to be an epic failure from what I had originally planned but I'm ok with it.  I don't think Blakeli cared one bit.  I was going to have three cakes and one was an O the other N then the last one an E so it spelled ONE.  Then I was going to give her the O and everyone else could eat the rest.  Well the cake was so crumbly that it just came out in pieces.  Then trying to frost it the cake just fell apart.  I have seen those pictures on Pinterest where they show what they were trying to do and what actually came out.  I wish I had those pictures you would be laughing.  As you can tell though she loved the cake!

 She had no hesitations and she dove right in and ate and ate.  Finally she got full and started throwing the cake all over so I gave her a bath.  The next morning I even found cake in her ear.  So fun!

 Here she is opening up presents.  She got some books, clothes, bath toys, diapers and this fun new Minnie Mouse ride on toy.  Thanks grandmas and aunts, she is spoiled.

She loves being pushed around on it.

This boy always has a way of making us smile.  So funny.

We had a great time celebrating this girls birthday.  I know she could tell that it was a special day for her.  I am so blessed to be her mom and I am so happy she is part of our family.  I couldn't imagine my life without her in it.  Thanks for always making us smile Blakeli Rose.  We look forward to many more birthdays ahead!

Surgery #10

So on February 26th , Tayton had his 10th surgery.  We found out on Tuesday night he would be having surgery the next day.  Yay, what a fun surprise, as you can tell by the video he was thrilled.  We were at the doctor (for Levi) and all of the sudden, infection just started pouring out of Taytons burn gloves.  It was pretty gross and Levi's doctor looked at it and drained some of it.  We called our doctor and she said she needed to get in there and clean it out.  So she called Primary Childrens and got the OR scheduled.

He was happy because it was an out patient and we got to go home that same day.  And we don't have tv at home (too many other medical bills) so he loved watching the Disney Channel.  I think that is why he was mad in the video because he was glued to the tv.

Oh root beer slushies, how we love you!  Too bad outpatient doesn't have chicken tacos.  But we stopped at Taco Bell on the way home and he got some tacos.

Then the next day we were at physical therapy, getting right back into the "swing" of things.  He loves it there.  We ended up going back to weekly apts because he is so tight again and doesn't have full motion any more.

He was going to do another laser treatment on St. Patricks Day, but that has been cancelled.  Basically the doctor says he keeps getting infections because his skin is so unhealthy.  Your skin is your biggest organ, could you imagine if your heart looked like his hands.  He just needs new skin.  So we were going to wait until summer to get skin grafts done, but now they don't want to wait that long.  So it looks like April.  He will be in the hospital at least 2-3 weeks.  It is hard because I don't know which kid to take care of.  Do I leave my little Blakeli and Tanna that long, but I can't leave Tayton there all alone.  So I guess we will figure it out.  I am so glad I have amazing family and friends to help me out.  I don't know what I would do without them.

And since he will pretty much be missing school all of April and May, I decided to put him back in school.  So we start school Tuesday.  He is so excited.  I am too, homeschooling is not my favorite.  But I am a bit nervous, there is a big outbreak of whooping cough in Weber County.  He has been vaccinated, but he just can't get any serious respiratory problem or it could be bad.  He needs school though.  I guess I am a pretty boring teacher.

I am scared for skin graft surgery because last time I didn't know what I was in for, this time I know and I am wondering how do we do that again?  But I am excited because I feel that this time it is going to go so well and he can finally start to recover.  It might be another year in compression garments, and another year of physical therapy, but after that he should be doing great and then we can really focus on just his airway and getting that healed, instead of his hands and airway.  And then we can work on his airway and then, just then, there might be a light at the end of this very long, very dark tunnel.  I am hoping!  One thing I have to keep reminding myself is that when Tayton was soooo sick in the hospital, I kept praying to Heavenly Father to keep him here.  I said "I don't care what it takes, or what I have to do, just keep him here."  And he is here and I have to keep my end of the bargain.  Sometimes I wish I would have been more specific :)

Everything else is going good.  I have spring fever so bad.  I can't wait to go outside and ride my bike, or go for a walk.  I love spring, I love summer and I am so excited!  I am also pretty happy that Tayton doesn't have to spend all summer in the hospital.  This summer we all ready have so many fun plans.  We want to do swimming lessons, summer camps, picnics, park days, burn camp, camping, hiking, we are going to Bear Lake with my family, hopefully a river trip in all of that.  I am just looking forward to fun!!!!  Tanna's goal is to learn to ride her bike with no training wheels.  Tayton still wants to do the monkey bars, and I am guessing Blakeli's goal will be learning how to walk.  She is growing up too fast, I don't know if I am ready for that but it is fun to watch her grow.  So I hope spring and summer come quick, I am sooooo excited!  Here is our little Blakeli, and this is what dinner time at our house it like.

Calling all angels!

Calling all angels.........So I have been a little crazy lately and I want to do something about it. So whenever you are feeling discouraged I think service is the answer. So I am doing a project for the University of Utah Burn Center. These are some items that we would love to give them.... Legos,-small sets so the kids can take home, they can't re-use them. (We have 12 so far) Legos are so amazing for physical therapy and have really saved Tayton. Crafts for the kids, the days can be long and extremely painful and anything to take their mind off of that would be great. So far we bought scene stickers, bead crafts, and some other misc items from Oriental Trading. We still need more. I would also love to donate crayons and coloring books. If you can think of anything else kids would love in the hospital, please feel free to donate. Then also for the parents we are looking for hygiene kits. Toothbrushes, toothpaste, shampoo, conditioner, hair brushes, things like that. Some of these parents live states away and come with their loved one on life-flight and don't have anything and the last thing you want to do is leave your child to go to the store. Thank you and please contact me if you can help!!!!!!!!!!!!!!!!!!