Now that we are home and I have had a night of rest (sort of) I want to give everyone a full update on how things went and what the next few years will look like.  First I want to backtrack to early Monday morning around 4 or 5 am.  Allie called me crying saying she hurt her finger.  She was moving in bed and somehow bent her pinky finger backwards and was clearly in pain.  She was able to bend it and it was not swollen so I told her she likely just jammed it and we iced it and she went back to sleep.  Later in the afternoon on Monday she told me it still really hurt and it did not feel like just a muscle pain.  Now lets go back over a year when she started complaining about her knees and shoulders and we all assumed it was muscle pain from therapy and moving more, I was not about to put her off again.  I took her to urgent care right then and there BUT the wait was over 3 hours and I told her we just couldn't sit in a waiting room that long 36 hours before surgery.  Her finger still was not swollen so I wasn't too worried.  I told her if it still  hurt in the morning we could get an x-ray when we were at the hospital to have her port accessed that afternoon ahead of her surgery.  Tuesday morning she said it still hurt so I messaged her oncology PA and asked if she could order an x-ray which she was more than willing to do.  Her appointment was at 2:00 and my original plan was to arrive at the hospital around 1:30 for the x-ray but then around 11:00 I looked at her finger again and at this point it was clearly swollen.  😢 I decided that we were going to head to the hospital earlier in case it was broken and would need a splint or something.  We had her x-ray and then got lunch.  After lunch we went up to the oncology clinic to have her port accessed and get her x-ray results.  The official report from radiology was not done but we looked at the x-ray and there did not appear to be a break.  She had her port done and we went on our merry way.  Well in true Allie fashion I got a message from her PA around 4:30 that the preliminary read was back and it appeared she had a small incomplete fracture in her pinky.  Thank goodness we were seeing two orthopedic surgeons the next day.  Only Allie could fracture her finger 48 hours before having orthopedic surgery on both her knees.  😂 

Allie was scheduled for the first surgery yesterday and we had to be there at 6:30 am.  We live about 45 minutes from the hospital.....it was very very early for both of us.  While the procedure was scheduled as outpatient her team and I had discussed the possibility of her needing to spend a night for pain management depending on how she came through.  Knowing what I know about her and our luck I packed a bag so we would be prepared.  Pre-op was fairly straight forward as we have been there so many times before.  Both surgeons were so good with her and took the time to answer all of our questions.  While originally the plan was to scope both knees, the doctor recommended that we just focus on her right knee as that one hurts her the most and on x-ray appeared to have the most damage.  He not only wanted to scope her knee but also to do core decompression to try and give her some relief right now.  Due to the core decompression they could only do one knee at a time because they would be drilling holes in her bones that are already weak in an attempt to stimulate blood flow and therefore can not hold much (any) weight afterwards.  Allie agreed that she like that plan.  Guided growth screws were placed in both knees and in an effort to get the maximum results since she is clearly nearing the end of her growing, he placed screws into both her tibia and fibula to really limit her legs from continuing to grow at an angle.  

Both surgeries went well and in total she was in the OR for about 2 1/2 hours.  The scope and core decompression was completed first, after which that surgeon came to speak to me.  He said her bones were not as bad as he thought but still pretty bad.  (See the look of shock and amazement on my face....I knew they were bad).  He said that her bones were essentially like oatmeal.  In terms of her knees, the meniscus is supposed to sit on the tibial plateau, however, in Allie's case they were very far apart.  He is hoping that as the guided growth works they will get closer together again.  He was able to do some decompression both in her knee and then into her tibia.  When we spoke about next steps for her knees he really wants to wait until she has finished growing so that if there is further need for alignment adjustments can also be made.  She can go ahead and receive grafts for her shoulders now but of course waiting for near complete skeletal growth is optimal but if we wanted to proceed there we can discuss once she has healed from this surgery.  The guided growth portion was performed by the pediatric orthopedic surgeon after the scope and decompression was completed.  He also commented afterwards about the poor conditions of her bones, again I am far from surprised.  He was very pleased with the placement of the screws and she will have x-rays in 6 weeks to confirm that they have not moved.  After 6 weeks she will then have x-rays every 6 months.  Typically the screws do not move, however, with the condition of her bones he said it is possible that they may move.  Based on the size of her growth plates he feels she has about 2 more years of growing which he said should be enough to correct her alignment but there are of course no guarantees.

When I got back to the recovery room to be with her as she woke she was in a lot of pain and initially asked to stay.  Her nurse asked her if she wanted to try a little of the pain meds first to see if that helped.  Of course with COVID the way it is, if a hospital stay is not necessary it is best to go home PLUS let's be honest that Allie and I have spent our fair share of time sleeping in the hospital.  After she had the pain meds and slept a little more she said that she wanted to go home.  I asked several times if she was sure but she was adamant which was fine with me. The hardest part is that her right leg is really not supposed to be bent and have really any weight on it, BUT her muscles are not as strong so that was of course interesting getting her into the car.  Once home John and John had a plan to get her into the house.  They literally lifted her while sitting in her wheel chair, like how when you have a kid in a stroller and don't want to wake them so you carry them up or down the steps in the stroller.  We got her set up on our reclining couch so that her leg can be elevated without bending at the knee.  The big game changer for her pain management this time is that she can finally take ibuprofen since she is off chemotherapy.  We have alternated between Tylenol and ibuprofen since we got home and she has only needed her stronger pain meds once.  We have all laughed as she looks like of like a mummy because both of her legs are wrapped in ace bandages from about mid thigh to her ankles.  Tomorrow the ace bandages can come off and I know she will appreciate that.   

Thank you for all your prayers yesterday I could feel them and their energy.  I will continue to update as she progresses.

Meredith 
#AllieStrong