Surgery #4 and #5

We got to come home yesterday from Primary Childrens.  I will try my best to explain how things went.  We took Tayton on Friday morning for his 4th surgery 4 months exactly after the fire accident.  He was in pretty good spirits when we went in because he got a new lego set and I told him he could put it together after surgery.  We sat in the room and played some video games before surgery.  For the first time I didn't cry, I was so excited for this surgery and I thought it was going to be a magic fix and he would be so much better after the surgery.  We got a call from the OR saying everything went phenominal.  I was so excited, I felt such a relief that this was going to help us get back to a normal life.  Then the doctor came in the waiting room and took us back to the consultation room.  Then he told me Tayton was still on the dreaded ventilator and my hopes were crushed.  I don't remember a lot of what he told me after because a flood of horrible emotions came rushing back.  All I remember really is the removed some scar tissue but he was having lots of swelling issues.  So then the doctor said Tayton was in the ICU and we could see him in a little while.  We sat back down and I just cried.  After waiting and waiting I asked the receptionist how much longer it would be until we could see Tayton.  She called the nurses in his room and they were having a hard time keeping him sedated on the medication.  (That was really no surprise to me because of all the previous issues we have had before with my super hero son.)  I explained to the nurse about my son being a super hero with medicine and he chews through it like you couldn't imagine so she let us come back.  Here is our little guy on Friday back on the ventilator.

 The doctor had told me this could happen but I thought for sure there is no way that it could happen again.  He looks much better this time on the ventilator then he did before.  It was really hard for me, I just kept re-living everything that happened at the burn unit.  I just thought that after 4 months after the accident we had come so far and now we were back to square one again on the ventilator.  There was amazing staff there at Primary Children's and they were really optimistic and were able to help me through it.  They ended up putting him on the paralyzing medicine again to keep him from moving and damaging his throat even more.  He stayed calm for the most part but did have his crazy thrashing moments every now and then.

Saturday they were going to try to take him off the ventilator early in the morning but there were so many "code blues" going off in the PICU that the doctors were just way to busy.  They apologized to us but I didn't care at all.  My son was stable and it was ok for him to stay on the ventilator for a couple of extra hours if it meant that other children were getting the help they needed.  Our doctor came in and decided he wanted to take Tayton back to the OR for his 5th surgery.  He thought it would be safer there in case they removed the ventilator and he needed it back in.  This time in surgery he dilated his airway and Tayton was strong enough to be taken off the ventilator.

I gave the doctor a big hug when he said he was able to get off and I think I freaked the doctor out because he is not a hug type of doctor.  I think our doctor is amazing at what he does but his social skill aren't my favorite.  He also said Taytons airway is about the size of a 1-2 year old child.  There is scar tissue all over which has made it so narrow.  We are going to have to wait and see how well the surgeries worked because there was still a lot of swelling in his airway from the procedures and it can take a few weeks for the swelling to go down.  He is going to do another dilation on his airway May 10th and hopefully that will open his airway a little more.  Our doctor said it will never get back to a normal 7 yr old airway, but he is hoping for maybe a 4-5 yr old airway.  If these surgeries don't work there is another crazy surgery that we could do but it is really complicated and scares me a ton, and I hope we don't have to go that route.After the surgery we went back to the ICU and Tayton was doing ok.  All he wanted to do was open his new box of legos.  It made me so happy to see him wanting legos.  He couldn't talk but he sure made it known what he wanted.

Soon he was off his oxygen and doing much better.  He isn't supposed to talk for a week but he still does.  His voice is really hoarse but I am pretty sure it will get better over the next few weeks.

 Saturday night his oxygen levels got pretty low again so we had to put him back on oxygen.  They brought him some fun things to do.  He still has MRSA (staff infection) so he isn't allowed to go to the toy room or do a lot of the fun things they offer there but they still did a lot to make our stay as best as it could be.

 By Sunday he was done.  He started shutting down and didn't want to do anything.  He seemed sad all the time, didn't want to do music therapy, physical therapy, or even eat.  He kind of sat there staring at the wall in shut down mode.  That is when I knew it was time to go home.  I made it clear to the doctors that we needed to leave soon.  We all agreed to stay one more night to make sure he was safe but they all thought he would do so much better at home.  Here is his done face.

 Before we could leave physical therapy wanted to see him.  So on Monday we went to the PT gym.  He didn't really cooperate but he did find the bike somewhat fun.  I was so glad we went down to the gym, there were so many other children there that have it so much harder then we do.  Three kids there weren't able to walk at all.  It made me appreciate what we have.  Even though we are going through this crazy trial and it is the hardest thing I have ever done, there are so many children at that hospital that are going through harder things.  Tayton will definitely have a lifetime of problems from this accident but he can still have an amazing life.  He is such a strong kid and has made it through more things in the past four months than most people can handle in their lifetime.  This may just set us back a while but he is such an amazing kid and is going to do some amazing things with his life.  I am so glad I get to witness it.  I am so proud every day to be my kids mom.  My children mean the world to me and it hurts to see him go through all this and I wish I could just take it all away from him.  But he is so strong and will make it through this.  I love my super hero son!

 So basically now we are on lock-down again.  He can't get sick or it will cause major issues with such a small airway.  I am praying this next surgery in May gives him a large enough airway that he can do normal things, like walk up the stairs without huffing and puffing.  Go to the park and play, run around, and just do fun kid stuff.  He is doing better at home now but still has his shut-down moments.  He is back on crazy steroids so he gets pretty mad at the smallest things.  But overall he is doing ok and I think in a few days he will be a lot happier.  Thanks for reading and if you think I am a little nutty (which I am) just remember I am 37 weeks pregnant.  I am trying my best to stay positive for my beautiful boy.

Biggest Aggie Fan!

He won!  Tayton was so excited to win the Lil Aggie Photo Contest!!!!!!!!!!!  Here is a picture of his face when I told him that he won! 

  I tried to record a victory dance but every time I get out the recorder he shuts down and gets mad.  Here is a little video I took on my phone, sorry not the best quuality.  He is on steroids so he gets a bit mad at the end but I think it is pretty funny.  I love his voice when he is talking, you can tell how excited he is.  Tayton got to choose between $400.00 to the USU bookstore, or season basketball or football tickets.  He wanted season football tickets.  It was amazing on the timing because right when they called to tell us about the prize, we had just finished up physical therapy and doctors apt. at the Burn Unit.  Dr. Morris, the chief at the burn unit, told us he has seen patients need as many as 20 different surgeries to fix their airways and we have a really long road ahead of us.  Me and Tayton were pretty down and we were headed to our next apt at Primary Childrens when we got the call.  Tayton was so happy and it was so neat that he has something to look forward to besides surgery.  So thank you, thank you, thank you to everyone who voted for him.  It cheered all of us up.  I never thought that putting a picture on a facebook contest could make such a difference.  The support this little guy has is amazing.

Here is a picture of his victory dance!

Here is proof he has been an Aggie Fan for a long time.  This is Tayton when he was 2-3 months old with one of his best buddies Big Blue!

 Right now the biggest issues with Tayton is his breathing, physical therapy, and sleeping.  Every night is a fight for him to go to bed.  He wants to sleep in our room and this is how this little boy sleeps.  He takes up the entire bed and he is constantly hitting me with his splints.  They hurt.  His room is right next to ours.  We tried having him sleep on our floor, but he always climbs up in bed with us when we are asleep.  So then we tried him in Tannas room but same thing he comes in 4-5 times a night.  I asked him why he wants to sleep right next to me and he says because I just love you so much mom and I feel safe by you.  How do you not just want to grab your little guy and hold him all night long after he says something like that.   I know I am a lot of the problem, but he just has been through so much that I want to give him whatever he wants.  Plus I am also scared of his breathing so I want to be able to hear him.  We are a fine pair between the two of us.  I am just torn between what to do, part of me knows it would help him phycologically if his can start sleeping in his own room, but the softy in me wants to just shelter him forever and keep him glued to my leg.

I am hoping his surgery next Friday will help so much with his breathing that maybe I can calm down and feel comfortable and not worry so much about him when he sleeps.  Then he might feel better if I do.  So his surgery of Friday they are going to laser off the portions of his vocal chords that are blocking his airway and I guess scar tissue will grow back and that is why he will have so many surgeries.  It will be a lot of the same thing, just removing scar tissue and vocal chords.  Dr. Morris said that a lot of patients with inhalation burns end up on a permanent tracheotomy, but he doesn't think Tayton will need that as long as these surgeries work.  He said Dr. Smith at Primary Childrens is one amazing doctor and we are in really great hands.  He also said if we don't do this surgery eventually his scars and vocal chords will block his airway completly, so we can either do it now, or wait until it becomes critical and then do it.  So I think it is a good thing we are doing it now.  Well that is our Tayton update and I will let you all know how his surgery is next week.  This week I just plan on recording his voice as much as I can.


Last night I had such a great night with my little Tanna.  I took her to Disney on Ice.  She had a blast.  I didn't tell her where we were going, but I had her in dress up in her princess dress.  We hopped in the van and I told her "Tanna buckle up please, " and she said "Mom, don't you mean beautiful princess Tanna,"  it was so cute.  She did look so beautiful.  Tayton got to stay home with dad, and he decided for their time together he wanted tacos and to play Indiana Jones on the Will.  So everyone had a fun time last night.  Here are a few pictures from our date night.

 I decided to take her on the front-runner instead of driving, so here she is so excited for the train to leave.

 Waiting for the show to start and yep she was to cute, I couldn't say no to her when she wanted one over-priced snow cone.

















Mom and Tanna after the show.  She loved it and was singing along to all the songs.  It was so fun to spend some time with her.  I feel like she has been pretty neglected by me, because most of my time is with Tayton doing therapy, school, or other things.  And I know with baby Blakeli coming soon that the time I do spend with her will even get shorter, but I wanted her to know that she is one special little girl and that her mommy still loves her and is so proud of her for being such a good helper with everything going on.  I know I need to make more time for her.  So we are going to have a date night every month.  Me and Levi will switch off between each kid.  I can't promise Disney on Ice every time though.