Surgery Update

We again are ready to spill some news that has been weighing on us for the last few days.  We choose to keep things to ourselves until we feel we are emotionally strong enough to talk openly about things and take opinions from those around us.  :)


The other day we called and talked to our care coordinator, Angie, to ask her a few questions about the surgeries and to make sure we were all on the same page.  We also needed to get some documentation for the school.  Everything went well.  We were a little bummed because they only have 3 private rooms so there's a chance that Kadence may have to share a room for some part of her stay at the hospital.  I personally don't feel a kid should ever have to share a hospital room.  It's so hard to be comfortable but then to have to share your space, handle the other child's many noises and try to be quiet and considerate is just asking too much.  I guess they "try" to get the halo traction kids their own room but there's no guarantee. The second part that was frustrating is that only Kadence gets free meals.  Now that may sound extra greedy I'm sure but it is still frustrating no matter how greedy it sounds.  Shriners requires an adult to stay with the child at all times (and we would without that requirement) but then they require you to purchase food from the cafeteria if you want to eat.  Kadence has stayed in the hospital for 10+ days twice and they always allow Kadence to order food as well as one adult.  If anyone else wants to order food they have to go to the cafeteria and pay.  This just complicates what we had planned because we will have to have the extra money we weren't counting on.  Neither of these two things are too difficult though, just minor bumps to our plan that I'm happy we sorted out in advance.

Later that day we got a call from Shriners.  I thought it was weird considering we had just talked to Angie.  It ended up being someone who asked if we had been given our surgery dates.  I assured her that we did and we knew it would be April 10th and May 1st.  She then said, "Ya...theres a slight problem with those dates."  Really?!  Kadence is looking forward to those dates.  She knows how many days she has left until surgery.  She knows we will be home from Boston for 2 days and then go to Salt Lake.  She knows that this is her final brace she'll ever wear.  To change that will really throw her off emotionally.  We finally got her to where she is doing pretty well with it all.  The lady on the phone told me that she would need to change the May 1st date.  She then went on to explain that Dr D'Astous has been out on medical leave since we scheduled our surgeries and would be returning to work on the 18th of the month.  She said that he is going to only be doing clinic appointments for a while and then will see if he's ready for surgeries.  Depending on how things go he may not do surgeries anymore, just clinic visits.  (I started crying at this point....quietly of course) She then said that I could try to see another surgeon and I told her that we trust Dr. D'Astous.  We have been dealing with him for about 5 1/2 to 6 years.  We trust him a great deal and we know he will take great care of Kadence.  This is devastating news for us.  We don't want anyone else to operate on our baby.  Not to mention that he is the only one who has gone and observed the drs in France who adapted the new form of rod that he was going to put in for Kadence.  Dr D'Astous mentioned that with how incredibly thin Kadence is that the more common growing rods could pose major complications.  That is why we decided to go with the other form.  The lady said we would keep the April 10th day for surgery and then we would need to move the May 1st date to May 5th.  Ok, the extra few days might not seem like a lot to someone who hasn't ever stayed in a hospital with a child before, but the extra days pushed me over the edge.  That is 4 more days in Halo, 4 more days in a room, 4 more days of food to pay for, 4 more days to pay for Ronald McDonald house, more time without work, no more hope of being home for Mothers Day, etc. (There was a tiny glimmer of hope for her being home by the 11th) All in all I was beside myself and David was gone.  He walked through at the end of the call and as I hung up I just lost it.  I of course had to keep composed while talking to someone who has no control over the situation but then immediately melted into an emotional wreck.  Since then I have gotten to where I can talk about it without freaking out completely, but I am still upset.  We both are.  We haven't told Kadence yet and don't know when we will.  We have a lot of decisions to make and we need to make them quickly.  Kadence's body is not doing well with the braces any longer.  This is about 3 sores all at different phases of healing.  They try to put extra padding in, different padding, push on different areas but nothing is working.  She has no other option besides surgery.  We can't do without the brace because she will progress to the point of crushing her internal organs.  Not to mention she already has pretty low lung function as it is.

We can't avoid surgery, it is our only option.  The decision now becomes what do we do, where do we do it and who will we have do it?  We will know about mid March if Dr D'Astous is going to do surgeries.  Then we aren't sure if he will do longer surgeries like the rod or just castings and halo surgeries.  We also have to decide if we still want D'Astous to do the surgery.  We are worried that whatever has happened might limit his ability to do as great of a job as before.  Although we do trust that he won't operate on a child unless he is fully confident in his ability.  We have told Kadence since November that she will only have one more brace.  If we find out mid March that someone else will need to do the surgery we will then have to start in the clinic and then reschedule her surgeries.  This will mean we need another brace in the meantime because her surgery was right around when she'd need to be fitted with another brace.  I don't want to mess with Kadence mentally by changing concrete things she has known about.  Because of this David and I are trying to find a plan B in case plan A doesn't work out.  We would like to get in to talk with another dr and see what they say as well as schedule the surgery dates.  Then if D'Astous can do the surgeries we will cancel Plan B.  I also have been contemplating the benefits of Primary Childrens over Shriners.  We love Shriners but I have wondered if it might be better to do the surgeries at Primarys instead and have her stay there. There are just a lot of things weighing on our mind and we are hoping to figure it all out quickly.  I seriously haven't slept in days and have been so completely exhausted.  I have spent my time doing research and when I'm not researching I'm debating all my options in my head.  I can't turn it off.  We love Kadence and want to make the absolute best decision for her. We will continue to keep our friends and family updated as we go along and as we make different decisions.  As you can imagine this is a very difficult thing for us.  We really appreciate all the love and support we have received from you all, it means so much to us.  Thank you!