Incredible Removal Surgery Day!!

One of the moms who has been through this process told me that 'removal surgery was a breeze!' a few weeks ago.  Honestly, I was so scared to believe her.  I was terrified that it would NOT be a breeze for us and that if I got my hopes up, I would only be disappointed.  You see, this entire process has just been so incredibly hard that I had lost the faith.  So, I figured we would prepare as best we could have just have no expectations about how this part would go so that we weren't disappointed in the outcome no matter what happened.

We woke up this morning super early in order to get to Sinai Hospital for our 6:30am check-in & intake paperwork.  Cooper was also to report at 6:30, so we knew that these two kids would be the first surgeries of the morning.  DJ and Buddy were set to arrive at 8am, so they would be next in line. All four kids were having their ex fix removal surgeries, so we knew we were in good company.  DJ's mom and Cooper's mom and I have been in pretty close contact the past few months.  We have a Facebook message thread between the three of us that has 1800 messages back and forth.  :)  We have sent pictures of the kids' pin sites, asked each other for advice, and shared information about what was coming up or what we heard from the Dr's office.  We sympathized with each other's struggles and celebrated the milestones.  It has truly been amazing having other moms going through the same thing at the same stage together - and counting down to this day together!!

The kids came together like old friends yesterday.  DJ and Ava hung out for a little bit before Cooper arrived and then the three kids played together and the moms finally got to chat in person a bit.  We all turned in somewhat early for the big day ahead.

We woke up this morning and headed to the hospital.  Pre-op takes FOREVER - just hanging out in the room waiting for the doctors to arrive.  The anesthesiologist came in and gave us the standard schpiel about how it would work.  They would give Ava 'happy juice' to keep her calm and also to help block her memory in case she has to have surgery again, she won't remember the bad stuff.  In the OR, they'd give her a bit of nitrous oxide and then the gas to put her to sleep.  Once she was out, they'd do her IV and give her a shot in the tush that would act as a pain block from the waist down for 4-6 hours.  She didn't want to take the 'happy juice' (she's got a huge issue with taking liquid medication after all the yucky tasting crap after the first surgery) but we finally got her to drink it and pretty soon she was feeling loopy and giggling up a storm.  We took the last pictures of her with the fixator before saying BYE BYE forever!!!

The anesthesiologist asked her if she had any loose teeth, so she showed him the one that has been sticking up for months now.  He said he really doesn't like the kids to have loose teeth when he puts in (and takes out) the breathing tube in the OR because there is a chance that it could dislodge and the child could get it stuck in their windpipe.  So, he quietly said that he would use a piece of gauze and try to pull it (once she was asleep).  If it came out easily, it would be fine.  If not, he wouldn't worry about it.  We told him that he had our permission to give it a really good tug because she is such a wimp about pulling teeth anyway and that one really needed to come out!!!  Well, when we got to the PACU after surgery, lo and behold, her tooth was in a jar and he had left $5 with it from the Tooth Fairy!!!  Hooray!!

Before they wheeled her back to the OR, we suited up and took some pictures - we were all so excited for this surgery!!

When she woke up, she was in surprisingly good spirits.  I had warned her that she might feel groggy and grumpy, but that we would be there and she would be okay and we needed to focus on the happy part - no more fixator!  She was sleepy, but happy and giggled about her tooth, even!

The bad news was that the brace was not ready like they said it would be.  We drove all the way up here a day early to get brace measurements so that it would be ready for surgery day.  Well, apparently, the brace maker called Dr. Standard's office (or they called asking about the braces for all four kids) and they blamed it on UPS.  So, we were left with the pink abduction pillow strapped to her legs, which is less than ideal, but works to keep the hip in the right position while they sleep.  They are supposed to wear the brace 23 out of 24 hours a day, but they can't do that with the pillow unless they sit in the wheelchair all day long - which these kids were NOT going to do once they got the ex fix off today!!  He said it was okay for them to be free of it for a bit.  The brace should arrive tomorrow - Monday at the latest.

Ava asked Dr. Standard if she could keep the fixator, so we have all the pieces except the pins that went into her leg (they said they are generally not given back).  The packet with all the hardware was on the foot of her bed and I picked it up and was shocked at how heavy it felt!  I knew it was a lot, but GOSH it's just amazing that she carried that thing around on her little frame for so long!

While we were waiting to be discharged, Dr. Standard came in to talk with us about what he saw during the procedure.  Not only did they take off the ex fix, he also cleaned up the pin sites - no more granuloma!!! - as well as releasing some tissue around where the pins went in so that the skin doesn't pucker so much as it heals.  They also did an Arthrogram (where they inject dye into the bone to better see how much regrowth there is) and Botox injection to allow her to have the most range of motion possible.  He said that Ava's hip and healing looked 'beautiful' and he is very pleased with the amount of regrowth he saw on the arthrogram.  He will have pictures of it for us to see on Thursday when we have the follow up appointment with him.  But all in all, he is VERY pleased.  He said that if she maintains the Range of Motion and works hard at PT, this should be the only surgery she needs!  MUSIC TO MY EARS!!!  He also said that one of the benefits of being so small is that she can be pretty much fully weight bearing right away.  I was really surprised to hear that.  He said that she can use crutches to stabilize herself with the brace as she walks (when we get the brace), but that she is more than welcome to stand on her leg and walk on it too.  Once the brace comes and she gets the hang of walking in it steadily, she doesn't need to use crutches or a walker. I had no idea!  I was super excited at that news, but Ava was not.  She's been looking forward to using two crutches for the longest time....she begged me to use both with the fixator and I said no...so she would love to use crutches for a few weeks.  We'll see what the future holds with PT.  He said that her knee bend is a bit concerning - even under anesthesia, her knee joint is very stiff.  He said it's not the worst he's ever seen, but she is going to have to work hard to get it back.  It may take 3-4 weeks, but he expects that with proper PT, it shouldn't be a problem.  We were so happy to hear everything he had to report.

I asked Ava if she had any questions for him before he went on to the next patient and her only question was, "When can I go??"  :D  She was so ready to get outta there!!!  It was also a HUGE day because she got to put on PANTS for the first time in 4 months.  She said, "You don't know how good this feels!"  Ha!  The pin sites are covered with big bandages and tape and then they have a compression band (like an ace bandage) wrapped all the way around her leg.  We get to change the dressings and shower her either tomorrow or Sunday.  (My preference is Sun, but we'll see)

She felt so good that she wanted to go get something to eat for lunch - so we headed downtown and ate at PF Chang's.  I swear it was the most that girl has eaten in 4 months!  She had four helpings of brown rice, 2 chicken lettuce wraps, and some beef and chicken!  I was stunned.  Hope that keeps up - I hate how skinny she's become!  When she got in and out of the car, she said, "Wow - my leg feels so LIGHT!"  And I bet it does!

We headed back to the Ronald McDonald House and she did a little homework (told you she was feeling good!) and then we hung out with the boys for the rest of the afternoon and evening.  They were all up and walking around with crutches/walkers and happy as clams!  They played board games, hung out in the game room and played a ton of ping pong and air hockey and just had a blast! It was so awesome to see her standing without that damn thing on her leg!!!

So, we had an incredible day!  Thank you to everyone who was thinking of us, praying for us, and sending good vibes our way.  Clearly, whatever you did worked.  All of the kids got good reports from the doctor and we are so glad that they are all doing well and happy.  Hallelujah!!!!!