So, here we are. The long awaited day, here at last. (Almost!) After dropping off Amy’s Little Brother at preschool, we got in the car, and headed to Stanford. (We are so unbelievably thankful for our amazing support system at home!)
Moments into the trip, we heard choking, then retching sounds followed by a wail. We hadn’t even made it to the freeway yet, and she threw up all over herself! (OMG THIS IS NOT HAPPENING!)
We pulled over right away, changing her shirt, and headed to the nearest gas station to buy wipes to clean her face and hands.We were panicking. Do we call it off? Press on? there was a terrible moment of indecision. Was she sick? Was it nerves? We decided to press on, and have an honest conversation with her doctor. Saying no would postpone things until February at the earliest, and I wasn’t certain that her little leg would hold up to the delay. We pressed on. In her (now clean) car seat, she was asleep in minutes. That’s not good, we thought why is she still so tired? The rest of the trip was uneventful, save the traffic.
A couple hours later, we pulled up in front of the hospital, just as Amy was starting to wake.
She seemed herself again. A little sleepy, but excited. After dropping off the car with valet parking, she was instantly enamored of all the tiny animal statues everywhere. Everything seemed to enchant her, from the animal footprints, to the wheelchair that looked just like hers, to the sticker she got to wear with my picture on it. We moved into the treatment center where we were supposed to meet her Child Life Specialist, and she jumped out of her wheelchair lightening quick. With Lucky the Unicorn tucked tightly under her arm, she went quickly from one toy to the next, drawing and playing with dump trucks, happier than a pig in slop.
A few minutes later, we met Molly from Child Life.
She engaged Amy right away and they talked about casts (I don’t WANT a cast. NO CAST!) and sleeping medicine. They talked about special hospital PJs, and even had a little hospital gown for Lucky.
Then they picked out a special scent for inside her mask and put Lucky to sleep, and then Amy breathed deep in the mask too.
We talked about preferences for taking meds (squirting or sipping) and she got to pick out stickers to decorate her mask.
They took blood pressure, put on bracelets, and had lots of fun playing doctor. At the end of our visit, we said goodbye, but Amy resisted. “But I don’t want to go yet!” W left, taking all her new medical treasures.
Next stop on our list was lunch. We headed over to Ronald McDonald House, where we crossed our fingers and asked if our names had made it to the top of the waitlist for a room. They hadn’t. Booo! We signed up for a day pass instead, and settled in for lunch. I had brought sandwich fixings, and settled about making food. I walked into the kitchen, and it was so weird to be walking through that room again. Suddenly, it felt like no time had passed between when I had stayed here with Amy’s Sister nearly a year ago and today. I noticed a lot of food set out, and I asked if there was a dinner service. Guess what? It was a LUNCH service! Guess I didn’t need to make food after all. ? I got a plate for each of the three of us, and we settled into eat. Amy’s Dad wolfed down his food, and said goodbye to us. Why? Turned out our car had NO BRAKE LIGHTS! Luckily, Amy’s Dad said it was a super easy fix. Minutes to fix, and a $12 part that was available at an auto parts store 3 miles away. He called for an Uber to take him to the store, and off he went, leaving us (momentarily) at Ronald McDonald House.
Amy was quiet, and after almost taking a bite, she declared she didn’t want the prepared lunch. Could I make her a sandwich? I had all I needed, so I whipped one up. She stared at it a good long time, before she decided she wasn’t going to have any of it. “Could I save it for later?” *sigh* This behavior was not good. Not good at all.
Once I finished lunch, cleaned up our area, and did the couple dishes I had used, we headed to the playroom. It was closed. ? Apparently, it didn’t open until 4pm. Amy was devastated. We checked the toddler room, but it was only available for under 2s. We headed into the family room to play a couple games. A Christmas game that was for 12+ (NOPE) Operation, but with no pieces (NOPE) Connect 4, that was being used by another family, (NOPE) a floor puzzle that turned out to be empty (NOPE)… This was not going well. She seemed so listless, and did she seem… warm? (NO NO, NO. She can’t be sick! We can absolutely not be sick at Ronald McDonald House!!!) ??? I asked her if she was tired, and her ice-cold hands touched mine. She said she was freezing, and I wrapped my sweater around her. I laid her down on a couch, and instantly she was asleep. (NOT GOOD!)
A few minutes later, Amy’s Dad called. He was back. We left the house right away, and talked about going home, or buying a thermometer, or just going to her pre-op appointment and asking what we should do. The car was all fixed, and we opted to head to pre-op. It was about a 20 minute drive, and again, she was instantly asleep.
Once we arrived, a whole new Amy woke up. Her hands were warmer, she was making jokes, but mainly chilling on her iPad. Suddenly, she seemed 100% fine. I decided that I was not going to survive this hospital trip, and that my cause of death was going to me emotional whiplash. Maybe it was just nerves, and her disappointments at Ronald McDonald house just depressed her?
We checked in at Orthopedics, and step one was seeing the nurse practitioner to be physically cleared. All Amy’s vitals were checked (No fever!) and her symptoms that popped up today were brushed off as nerves. As far as the cough she has had for the last week or so? She said not to worry about it. Her lungs were clear, and that was all that mattered. We sighed with relief.
Step 2 was to get one last AP x-ray.
No changes. (Phew! Not that I expected any, but it was nice to hear/see anyway.)
Step 3 was to see Dr. Frick and find out what surgery we were going to do. Amy’s Dad and I were about to climb the walls, we were to anxious to find out what the verdict was. Amy couldn’t care less, lol!
Dr. Frick arrived, and we found out that the symposium had been an international one. Unsurprisingly, no one seemed to be able to really agree on what should be done with Amy’s special leg. However the consensus was to remove the McFarland Bypass, and rod her. Worse, most everyone agreed that her leg was broken. :'( Dr. Frick is like, “I really don’t want to do that. She’s come so far, and you’ve invested so much in this process. Let’s try to get this McFarland to work.”
SO! Here’s the surgical plan. Dr Frick wants to reattempt the McFarland Bypass, and we completely agree. She will have grafting material harvested from the back of her hip, and that will be used to fill in the “bad” areas at the bottom of her graft, as well as the big open space in between her graft, and her tibia. There is a small area of bone at the bottom of her graft that looks particularly bad. This will be removed, sent to her genetics doctor for study, (to help others) and this area will also be filled in with bone from her hip. Additionally, if there is room in her leg, we will be adding yet ANOTHER bone on top of all of this (Think bone sandwich) to further stabilize her leg.
So, that’s the plan. Yikes. We’re doing two nerve blocks, (One for her leg, the other for her hip) so that should help pain-wise. Her cast will also be split to allow for swelling. (Something that wasn’t done last time.)
Amy is still super, super upset at the idea of a cast, but we will get through this. I hope. ? She’s also more than a little panicked at the thought of having to take the “yucky medicine” but there’s really nothing that we can do about it… We’ll jump that bridge when we get to it. We’re reporting for surgery at 6am, with a start-time of 7:30. It’s anticipated that surgery will be about 3 hours.
With no questions left to answer, we headed out to find our hotel. It was fairly close, but this is the Bay Area. That means it took 45 minutes to drive that 15 miles. *sigh* We arrived at our hotel, and checked in with no problems. We picked up our things and looked at our room. Guess what who was waiting for us when we got there?
Tinsel, our Elf-on-the-Shelf!
She had left a note this morning about waiting for us in our new room, and Amy was SO SURPRISED that she was there! After our long day, her excitement was everything to us.
Amy and I had sandwiches for dinner, and a little chocolate for desert. Amy’s Dad called up GrubHub for some Mexican, but he joined us for the chocolate. Then we got down to having a very through bath. Once she was all scrubbed down and toweled off, we tucked her into bed with an iPad and set the timer for an hour, so her pores could close after her bath. Once her pores closed, we got busy with the special anti-bacterial wipes that Dr. Frick had given us.
She did NOT enjoy the wipes. Neither did I. They left me with a very sticky feeling on me. Yuck. Do. Not. Recommend. This was not my first rodeo with them, however, so I knew that once she dried, the tacky feeling would fade. Then, into brand new, clean, PJs she went. Happily, she is no longer sticky.
So here we are. Fed. Clean. Time to sleep.
Tomorrow is big, big day for her and Lucky. Send us prayers, we will need them. As for me? Deep breaths. The first 48 hours will be the worst. After that, it will be easier. (Now all I have to do is convince myself…)
