2/21 5:03am. Surgery day.
Couldn’t sleep, so Amy’s Daddy and I talked until 1, when we finally could sleep. Now here I am. AWAKE. I’m not supposed to be awake for an hour and a half.
Sleep is impossible. ? My stomach is a tight knot.
Last night she suddenly needed to cry herself to sleep. “I want to go home!” ?Hopefully I can cheer her up when she wakes. For now, she sleeps. She will need it.
I AM SO NERVOUS!!! ? Can’t let her know. This is her adventure.
Look at her sleeping… I almost can’t bear to wake her.
2/21 6:00am – It’s time to get a move-on.
What better way to shake things up and smile then to start the day with a teddy bear dance party? No food for any of us. We’ll all starve in solidarity together.
2/21 8:00am: We’re on our way! Dance with us!
2/21 8:15am- We’re here!
Check out Amy’s wheels! This is how we get to get around the hospital pre-surgery. She’s digging it!
Another slight change of plans. The kid from last night who was getting his life-saving transplant is still in the main OR where Amy’s surgery is to take place. As of an hour ago, the transplant team was still working on him. We are now looking at a 12pm-1pm start time. So, Amy gets clear fluids and popsicles until 10am. She is happily entertained and watching Lady and the Tramp.
2/21 11:45am: They just told us that things are moving faster than anticipated, and that Amy needs to stop clear liquids now. She’s about a quarter of the way through a popsicle and we have to take it from her. Big problem. She looks to us for an idea of how to best take it away. Daddy had the best idea. “Amy, can I have a bite?” she nods, and offers it to him. He took the entire popsicle into his mouth, leaving only the stick. Amy was HORRIFIED. We worked together to redirect her towards new toys while Daddy went to get a cup to spit out the popsicle. She was trying not to laugh, apparently she’d never seen a parent do anything like that before.
2/2112:05pm: We’ve been moved into the pre-op room. She sniffled once, and when the nurse turned to us, we told them she had allergies. Her airway is clear, and so is her nose… almost. Oh man, this is really happening, huh?
They decided to torture her one last time before surgery. They removed her cast. Oh, how she HATES the saw! But they needed to clean up her leg.
Doctor Hoffinger looked so strange! He was wearing scrubs… but I’ve never seen him out of a suit. It was the weirdest thing. He thumbed up her clean leg and signed it. Amy also picked out the colors for her cast. Red and blue. Should be interesting!
When he left, the lights were all dimmed, and they set up a little portable movie theater in her bed for her. She drank her Versed, and spit quite a bit back out at us, but hopfully some got into her. We played with the hoses, and bubbles.
2/21 1:00pm: The medicine is kicking in, and she stared to slow and relax a tiny bit. As if by magic, the surgical team appeared, slid up the side rail for her crib, and wheeled her away from us. I watched her go down the hall and pause. No cries from her. She went through the door, and I knew my part was over- and burst into tears.
2/21 1:30pm: HER LEG ISN’T FUCKING BROKEN!!!! ? ? ? ?
They have started her procedure. Should last about 2 hours. OMG. I can’t believe it. I just can’t believe it. I’m an ugly crying mess right now in the middle of the hospital cafeteria.
2/21 3:30pm: The Chinese New Year celebration was going on, and this was my fortune. I immediately remembered that I had received this same fortune the day Amy had received her first brace.
Back then, I took it as a sign that I was meant to look elsewhere for someone to help heal her leg. Having found that someone, seeing the fortune again while she was being operated on. It made me feel like I had done the right thing- getting her into hands that could help her. I cried a little. Again.
Could it have been a coincidence? Sure. But it sure doesn’t feel like it!
2/21 3:55pm: They’re closing now, waiting to talk to the doctor.
2/21 4:21pm: Just spoke with the doctor. Everything went great! Couldn’t have gone better. Waiting for her to move to recovery now. No nerve blocks were allowed, so we’re probably in for a rough night. Less than 50% chance of going home tomorrow, but we don’t care. New x-rays were taken, but I haven’t seen them yet.
2/21 4:45pm: We are in recovery with Amy. She is very uncomfortable.
2/21 6:30pm: Amy is finally asleep. She had no nerve blocks of any kind, so she was in a lot of pain. After a lot of tears and drugs, she seems to be comfortable. I’m in bed with her, and we are headed up to the 4th floor now.
Lucky the unicorn did awesome in surgery too! He has a cast as well, an ID bracelet, and an IV. He was very brave.
2/22 9:00am: Good morning! Greetings from the 4th floor. Amy is awake and alert this morning. (By the way, she is in Cast #9!) She just finished her breakfast and is eating her 900th popsicle.
She is very comfortable, and seems herself for the first time. This is probably because she is on a continuous drip of Dilaudid, which is a narcotic. She also has a PCA, which means if she needs more, we can hit the button and she gets a little extra. The nurse just left, forcing oral medication and taking blood, so she’s a little mad at everyone. We were able to cut down her IVs from 2 to 1 though. So, she can comfortably use one hand. Small victories!
An orthopedic resident came by and checked her cast and toes. Both look good! We are expecting to see Dr. Hoffinger later on today, and we got to see her x-ray!
We didn’t want to alarm anyone yesterday, but our time in recovery was horrific. The staff was wonderful, but it took nearly two hours to control her pain and get her comfortable. It was beyond words to see her like that, and feel so helpless. They never said anything to us- but we could tell they were very concerned with how difficult a time she was having. So, seeing her pretty normal today? That’s an amazing relief. We are definitely not going anywhere today. We want to wean her off the Dilaudid first, and get her comfortable on oral pain medication so she can be comfortable (and heal!) at home.
The important bit is that she’s turned the corner and herself again. We’re focusing on that. Oh! Her wheelchair will (finally!) be delivered today to the hospital. Positives!
2/22 11:30pm: Sorry for the radio silence all day. Amy has really had a terrible day. We didn’t want to worry anyone needlessly, so we stayed silent. Amy started complaining of pain around lunchtime. She fought and refused to take her oral pain meds, spitting them back at us as best she could. (I don’t blame her. It tastes NASTY.) So, we assumed her pain was due to coming off her continuous IV meds, and having few painkillers in her system. We finally got her to take her meds, mixing them with chocolate pudding. She doesn’t like it, but it’s tolerable.
She perked up right away, but it was short-lived. As time passed, she grew more and more uncomfortable, her crying jags lasting longer and longer… until it started turning to screaming- with the breaks between screaming fits getting shorter and shorter, and the 8-minute interval between being able to push the button for pain turning into an eternity.
We tried elevating her leg, putting her into a more comfortable position, distracting her with food, toys, movies, cuddle time, encouraging her to sleep… nothing worked. Then we starting doubling up in meds, to no avail. Her PCA button stopped working completely, and we died a thousand times and we tried and failed to comfort her. At last- finally, she simply passed out from pain and exhaustion.
I have never felt so useless.
Her doctor finally emerged from a long difficult surgery, and came to see us. He decided to put her back on her continuous drip. He also thought her leg was swelling inside the cast, and decided to cut it along the sides. The results were immediate. The moment he was done, she smiled, and wanted to play.
We’ve been relaxed and almost enjoying ourselves since. Until now. She’s complaining of pain again, and meds aren’t helping much. A doctor just came and opened her cast more. After much coaxing, she slightly wiggled her toes. Hoffinger would not be pleased to see how open it is, but we have no choice. I hate this. ? But at least she is peacefully sleeping.
2/22 11:30am: Continuous IV Dilaudid has been stopped, but still available on the PCA (push button thing). Oral oxycodone has been started, and Tylenol too. She’s out of bed and sitting on my lap in a chair. ❤️
2/23 8:00am: Morning from Stanford. Amy slept well all night, but is having more pain this morning, as well as a low fever.
The orthopedic resident was just here, and said that Dr. Hoffinger left orders to further split the cast overnight if pain was an issue, so I’m glad that spreading it further was something that he would have supported. Spreading it even more at this point is concerning though as it may just encourage swelling. If we continue to have more uncontrolled pain, we will be meeting with the ortho and pain team together to make a new plan. If her pain IS controlled, we will still be meeting with the pain team later to discuss next steps.
This morning, she is on the continuous drip of Dilaudid, as well as the PCA Dilaudid, plus in the space of an hour we had 2 doses of Oxycodone, Valium, and Tylenol- and that finally put her to sleep. We also have Ativan if we need it, but haven’t used it in 12 hours.
That’s a lot of drugs. I’m not gonna lie, I’m concerned. But she’s comfortable right this second, so I’m trying to focus on that.
Dr. Hoffinger has a speaking engagement today, so we won’t be seeing him- but he can be reached if necessary for advice, so that’s positive. We’re just all hanging in here. Prayers for healing are appreciated. ?? ❤️
2/23 10:30am: Amy has been dozing comfortably for about 2 hours now. She took all her meds (with chocolate pudding) and seems to be comfortable. She still has the low fever.
Pain management just left. We have decided to attempt to pull the continuous Dilaudid IV medication again, and see if she can be comfortable without it. ?? ??I’ll update this in a couple hours.
2/23 11:55am: Not much of an update, but Amy hasn’t budged once. The nurse just took her vitals, and her fever broke. ❤️ I will take sleeping over screaming any day. We’re taking advantage of this respite. I got a shower in, and Lauren is playing the part of the hunter/gatherer down in the cafeteria.
2/23 5:20pm: I have a good update to share! Amy has really turned a corner! She hasn’t had any IV meds since this morning AT ALL! Pain management just left, and we have a solid plan.
Amy is very comfortable on her oral Oxycodone and Valium. They are taking away her PCA, and releasing her from the monitors watching her breathing and heart rate.
Also she really got out of bed for the first time, and into her wheelchair. It’s a little big for her, but she’s excited to go for a ride… after a nap. Maybe.
We are very much on-track for a discharge tomorrow. ?
2/23 6:30pm: Jailbreak! We ditched out of our room for the first time and went exploring around the hospital. ❤️
2/24 8:30am: Good morning from the 4th floor! Amy had another great night. She’s been on oral meds now for nearly 24 hours. She does have some breakthrough pain, but we are able to manage it orally, which is fantastic. Good thing too, because last night we had to remove her remaining IV because it was causing her a lot of pain.
Our nurse had previously told us that if we felt it necessary we could have it removed, and a new one wouldn’t be required. We agreed that it was best to leave it though, just in case. Then shift change happened. Amy complained of pain, and we insisted on removal, but the new nurse refused. So, I had to bully her nurse a little, but I eventually tricked her into removing it.
The nurse was flushing her IV and explaining to me that if it was hurting her,then flushing would hurt, and Amy was obviously fine… so I stabbed Amy hella hard with my fingernail in the palm of her hand. Amy screamed, and the nurse fell all over herself to remove the IV. Don’t mess with my kid! ? She’s been through enough. When the nurse left, Amy smiled and said her hand felt better. Her daddy high-fived me.
Last night we were continually waking her for pain medication, and although she protested waking mightily, she took it and went back to sleep. She isn’t awake yet, but as long as she wakes up well, and her pain is still managed, we get to go home! ? ? ? Her next dose is in 30 minutes, and she is still sleeping soundly, so that is a GREAT indication!
The plan is to to wake her for meds at 9, have breakfast, get dressed (in real clothes!) and head down to the playroom to have fun, while Daddy packs everything up and handles all the paperwork and nonsense.
Amy is really struggling with the concept that she has limitations now, particularly the need to be in a wheelchair. I’ve discussed this with the ortho resident, and he feels that it is fine to allow her to sit and play on the floor with other kids. As long as she’s not trying to stand or do anything crazy.
Also, she made a new friend. Look who Daddy found in the gift shop? ❤️
Our post-op appointment is on Tuesday, so that is the next time we will see her doctor. Hopefully I will get to update with news she is headed home next! ❤️
2/24 11:15am: Hi from the 2nd floor! Amy is having a blast in the Child Life Playroom. She woke up well, with no complaints of pain. She took all her medication, and showed interest in real food for the first time since Tuesday.
Here in the playroom she’s in regular clothes, and seems to be mastering the art of crawling on her regular leg, while dragging her special leg behind her. She has no complaints of pain, and is HAPPY. For the first time this week, I feel like I can breathe. We may not know if this surgery has worked, but regardless, she will be just FINE. ❤️
2/24 1:00pm: Hi from the parking garage! We’re outta here! Thank you for all your kind words and encouragement. It really has meant the world to us. ❤️ ❤️ ❤️ ❤️ ❤️
2/24 9:00pm: Hello from Our House! We’re home, and have moved her bed into our room so we can be more attentive in the middle of the night. She’s taken her medication, and been read a story. I bet she will sleep a lot better in her own bed than she ever did in the hospital. ❤️
Thank you again for all your thoughts, prayers, well-wishes, messages of hope, encouragement, and advice. It really has been our everything. I would ask that you indulge us in not having any visitors for the next few days while we settle into our new normal. Thanks, everyone, for understanding. We love you all!
This will be our last update to this thread.