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.