Shriners Visit

On Wednesday we had another appointment for Kadence to go to Shriners.  We got to Salt Lake a little early so we stopped to play at a park.  

 We first checked in to get our xrays.  We weren't told that Kadence's xrays would be out of brace so we had her brace on.  This is a problem.  They like the brace off for hours if not a whole day before they do the xray out of brace.  (We just weren't told)  We took it off immediately and they decided to wait a half hour and then just take the xrays anyways.  We went to the clinic and that portion I will go into detail after the orthotic portion.  We went to orthotics to get a new brace molded for Kadence.  She chose a butterfly pattern with pink straps this time.  Its kind of intense because they wrap casting material on her while they mold it.  It dries quickly so they don't have much time to manipulate it.  David holds her feet and pulls them a tiny bit while one guy pulls her head to give some tension.  Then our dr and our orthotic guy do the molding.  Kadence is such a great kid and never ever complains during any of it.  

 Her face does start to go red because she forgets to breath while they do it.  

 We always tease her that the material they put under while they mold is what she should wear to prom.  We still haven't convinced her despite our efforts.  Then we told her that she could wear this as a necklace!

 Now onto the clinic portion of our appointment.  Because Kadence keeps getting sores pretty constantly right from the beginning of a new brace we have to try something different.  Her skin is just too broken down to have constant pressure on it.  She is also rotating clockwise and her left shoulder is rotating forward. The only other option we have is to do growing rods.  David and I knew that this was coming.  We were not thrilled but from the beginning when we got to Shriners they told us we would be lucky if we could hold off on surgery until she was able to do a final rod fusion at about 13ish.  We were hopeful, but knew that each cast and brace we did meant 4-5 months more without having to put in rods.  Well, the day came for him to tell us it was the only option.  We trust our dr a great deal.  He is amazing and is always learning new techniques.  Kadence hasn't regressed a ton in the past year while in the brace, but our xray results weren't very accurate because she was only out of brace for a half hour.  In the year while in braces 24/7 minus church, dance and bath she went up 5 degrees.  This isn't much but again it isn't accurate she would be a little worse.  This means that without the brace she would have gotten MUCH worse so we don't have the choice to do nothing.  Growing rods are our only option.  Because I knew this might be coming I started my research so I could ask appropriate questions.  There are the normal growing rods and then there is a new thing called the VEPTR.  I wasn't too fond of either and couldn't decide which I liked best.  Well, we weren't even told those options.  Her Dr would like to try something different on Kadence.  She is so skinny and her bones are so prominent that he thinks the hardware of the two previous mentioned options would be too bulky and would possibly have more complications.  He had gone to France recently and had seen a new type of growing rod being used.  It is a single rod and is attached with pins and screws versus being fused.  It is thinner than the other options.  The problem is that it has only been done on about 30 patients.  They have followed some patients 6 and 7 years and there have been about 3 problems.  All have been with the rod snapping under the tension and didn't cause any damage to the spine or the spinal cord.  This doesn't mean it won't ever, but the other two options have had quite a few complications.  He showed us before and after pictures and the difference was better than anything we thought we could expect.  There are of course risks.  At any time you add something to the spine and then move it, you are at high risk of something going wrong.  We agreed that this would be the best option for Kadence.  It will be a major surgery in which her back will be basically cut from top to bottom while the rod is attached.  There will be extra rod past the screws so that as she grows they can go unscrew the bolt, move the rod up a little, tighten the bolt and close her up.  This will be done every 6-10 months.  The other portion of this rod being placed is that Kadence will need halo traction beforehand.  

 What is halo traction you may wonder?  Well they will do surgery to put 4 screws into Kadences skull.  She will then have a metal halo that is attached to the screws.  This is so that they can add weights to pull Kadence a little straighter.  This is specifically important for the rod placement.  It will get her spine used to having a lot of tension and will decrease complications once the rod is placed.  It will also pull her to her maximum flexibility making it so the rod is placed and gets the most correction of her spine as possible.  Here is an example of a little girl in halo traction.

Kadence will be in halo traction for 3 weeks and then have the rod placed.  She will spend a total of 4-5 weeks in the hospital as long as everything goes as planned.  Then we will be able to take her home and care for her there.  My whole family will live in Salt Lake during this time so we can be close.  None of us function well without a member of the family so it is what is best for everyone, especially the girls.  The first surgery will be May 19th and the second will be June 16th.  We are hoping to get her home and have her feeling ok by her birthday.  She won't be able to participate in any physical activity for 6 months after rod placement.  They have to allow time for the spine to become strong. They had Kadence meet with a respiratory therapist to teach us how to improve her lung function.  She will work with Kadence while she is in the ICU and after as well.  I love this picture below.  Shelby was trying to "blow" just like Kadence was they had to breath in and hold it until the therapist told them to blow.  She is seriously Kadence's biggest cheerleader and the BEST sister ever.  

 Then we had to go and get pictures done so they can document the before and afters.

 This part makes me giggle...

 Kadence didn't really understand anything that was going on because she is just blissfully ignorant.  I was grateful because I wanted to tell her at home.  When we did she tried to be brave.  Then she all of a sudden started crying and said "It all sounds so scary."  We are not people who lie to our kids about things like this and we told her the good and bad of it.  I just held her.  That was the hardest part of all of it.  Holding my sweet girl and not being able to tell her that it wasn't scary.  The fact is, we are scared.  David and I are scared too and so is Shelby.  Shelby tried making her sister happy and then we brought her to dance.  We usually don't stay but did for the first half hour to make sure she wasn't going to meltdown.  I snapped some pictures because my sweet girl won't be able to bend her back at all after surgery and it breaks my heart.

 We ended up leaving for the last hour of dance and the whole time Shelby worked on making this for Kadence...

She did it all on her own without any help.  She made sure it was blue because that is Kadences favorite color.  She put it on her bed so she would see it and it would make her happy.  Shelby seriously is the greatest sister anyone could ever ask for.  She hates seeing her sister sad and will do anything she can to make it better.  

David and I were pretty devastated so we have been cautiously sharing with others until we could emotionally strengthen ourselves.  Well that has happened pretty quick.  We are confident in our decision and we know it is what is best for Kadence.  We wish things could be different, but they aren't so why stress and worry about it?  It is what it is.  We will now be able to focus on getting things ready and piecing together all the details.  Luckily we have 6 months to figure it all out.  We are asking that nobody talks to Kadence about her surgeries and please don't talk about it while she is around.  She doesn't have a good sense of time and we don't want her worrying anymore than she already is.  If she brings it up you are more than welcome to talk to her about it.  We have encouraged her to come to us with any questions she has, as well as Shelby.  It is confusing for them.  They are just babies still and can't understand fully what is happening or why.  It isn't like the final rod fusion she will have in which she will be 13 and understand better.  The risks are much higher because we will be reopening her wound every 6-10 months which poses greater risk of infection, the hardware could malfunction while adjusting the rod to allow for growth, etc. The growing rods are riskier than the final rod fusion will be.  We will still end up fusing rods when her spine is mature and the rod that is in will be removed.  That will be another bigger surgery.  All of the surgeries in between will be a small 2-3 inch incision and she will go home that day or the next day.  She will be able to resume all activities once the incision has healed as well.  We are now doing a lot better with the news although we are not happy with it.  I know this blog post has been jumbled and maybe hard to understand.  If you have any questions don't hesitate to ask.  I may not know the answer because we are still trying to figure everything out, but I will try to find it if I don't.  We love you all and are so grateful to have such a great support system.