It begins. I’m on my phone. Not terribly nervous, but can’t sleep. Waiting for the numbers to click to 5am. It finally does, and the alarm rings. Okay. We’ve got this. We dress, with terse words between Amy’s Dad and I. Snipping and back biting happen, stress – they do nasty things to us even though our relationship is solid. Finally ready, it’s time to wake the girl.
She’s already requested to stay in her PJs, so I pull a hoodie over her head, brush her teeth, and- “WE HAVE TO LEAVE NOW!” yells Amy’s Dad. Being timely is not my strong suit, so when it’s really important (like today) when Big Ben (aka Amy’s Dad) says it’s time to move, you MOVE. Into her chair, covered with a blanket, bags grabbed, and into the car. We stopped by the front desk to turn in our keys, and we were off on the 20 minute from the hotel to the hospital.
Good morning! We arrived today and got checked in. She immediately wanted to go watch the balls in the machine.
We arrive in pre-op. Her vitals are taken, and she’s cleared (again) for surgery. ?
All dressed in hospital PJs. They are way too small, but she wanted purple, so too small it is! (Proper size is green, lol)
Dr. Alicia (an orthopedic fellow working with Dr. Frick) came by to check out Amy, sign her leg and hip (the two incision sites) and answer questions. The hip initials tickled!
After pleading, cajoling, begging, fighting, and then threatening, Amy took her Versed (aka “Giggle Juice”) and quickly got the giggles over Lucky having a mask on her face. ?
Then, she got very quiet… and sleepy…
We got one last look at our warrior princess as she went back with nary a tear or argument.
Amy’s Dad and I head to the cafeteria to break our fast, and update the family.
Proc Start McFarland Bypass (Take 2!) actually begins
Those words (Proc Start) make me crazy. It won’t change until they are closing up. We’re looking to get an update in about an hour. She’s going to be fine. I know she will be fine. I will not feel better until I hear she is fine.
The surgical nurse just called. They are about an hour in, and everything is going really well. We’re hanging in there.
The gift shop is open. Amy’s Dad and I head down to see if we can find a gift for Amy.
Update: Nope. Nada. I’m disappointed, our wallet is not. LOL
We arrive back in the surgical waiting room, and the lady at the desk pops her head up. Oh! They just called for you, they’re closing already! (WHAT?!?) We’re thinking this means that they didn’t add the 2nd fibular strut, but we will find out when we see the doc in a few minutes.
This is not “a few minutes”. I’ve taken to pacing. I’m irrationally afraid we will have a repeat of last time, and Amy will wait up hurting, afraid, alone, and screaming. I need to talk to Dr. Frick so I can get to her. WHERE IS HE?!?
Pro-tip. When the surgeon says, “Do you want to see the picture?” SAY NO. Jesus. (I don’t have the pic, I’m not sharing it, but it was interesting to see. Like a train wreck, I couldn’t look away.)
Okay. AHEM. Surgery went really great. Her tibia was absolutely, 100% STILL NOT BROKEN. Also, her graft was a lot more solidly healed than it appeared on x-ray. So, that is FANTASTIC news. They were able to harvest quite a lot of grafting material from her hip, so she didn’t need any synthetic material to augment what was harvested. (More good news!)
Inside her leg, there was an area of “lucency” or bad bone. This was removed, but done without compromising the structural integrity of her leg. There was also a lot of kinda gross, abnormal Peritoneum (membrane) covering her bones. This is pretty common with NF kids. All this was removed. (Because, diseased.) The removal also will NOT impact the structure of her leg.
All that done, all that healthy bone material from her hip (which weirdly looks like hamburger BTW) was packed in-between her McFarland graft, and her bowed tibia. Holes were also drilled into her tibia to allow for bone marrow to leak in and out, and help her heal.
Here is a fluoroscopic image of her leg now. All that grey spiderwebish stuff in her keyhole? That’s the graft from her hip. Girl has one job now, turn all that to solid bone!
Lastly, he laid BMP (Bone Morphogenetic Proteins) along her leg. These thin sponges cover the McFarland graft, all the grafting material, and her tibia. The BMP greatly stimulates the healing process. (They don’t really show up under fluoroscopic imaging.)
That bad bone he took out?
It’s on its way to see Amy’s genetics doctor. She’s enrolled into his NF1 research project, so hopefully he can learn something from her yucky bones that he wants to collect. (Last time he didn’t glean anything because all he got was healthy tibia bone from her.)
Here is the BEST part: Her bones (structurally) are already (still?) healed! So all her body has to do is convert that graft to bone to strengthen her leg. She should be up and in her feet pretty quickly, and heal much faster this time. We all feel incredibly optimistic about her chances of actually, solidly, (finally!) healing this thing!
We’re sitting in silence in the PICU with Amy. She woke up for a moment, looked around, said “Hi” to a doctor, and went back to sleep. We’re just waiting for her to wake again, and keeping our voices low.
She has a nerve blocks at her leg local anesthesia injected into her hip, and her cast (#13!) is split, so when she wakes, she will hopefully be comfortable. ? (Her split cast is being held together with stretchy Coband)
Hello from the 4th floor! Guess what, she’s awake! Popsicle #1 on board!
Wait, nevermind. She’s asleep again. ?
Hi all. We’re struggling a bit with pain control over here. Prayers our way are appreciated. Her leg is still asleep, but her hip is causing big crocodile tears that are tearing at my heart ? My poor baby.
She’s not interested in food, but she is on popsicle #3, and apple juice is her friend.
All day, Amy has either reported severe pain (9-10) or no pain (0). Never anywhere in-between. There is also no warning for the swing from one to the other. What really bother me though, is that Amy isn’t, well, Amy. She says she has no pain and is fine, but she is very subdued. She doesn’t smile, or laugh. She just sits on her iPad, demands one (or both) of us to sit next to her, and sits. She doesn’t smile, joke, or have any life in her. Then all of a sudden, she begins screaming, out of the blue. It’s always her hip that hurts. (Her leg is still asleep.) We’re going to give a dose of morphine to try and control her pain. ?
I’m absolutely stunned. Two minutes since the nurse pushed that morphine into my baby girl, and she just looked at me and SMILED. (I will not cry, I will not cry.) She joked, she laughed, my God, she’s Amy again! Man, I have missed her. I wish morphine was longer-lasting…
Good morning from the 4th floor. Yesterday afternoon/evening was very difficult. We had a hard time managing her pain and eventually had to reach for some morphine. A few moments after receiving the morphine, she finally seemed herself for the first time since surgery, really smiling for the first time. ❤️ (Her red cast looks SO COOL!)
Medications are a lot easier this time around. Not only is her pain better controlled, but they have a cherry syrup they are adding to her oxycodone and colace that is making it palatable. I am super grateful for that! (I need to get my hands on some for home!)
Moving at all is incredibly difficult for her, and she goes to great lengths to be certain not to move. ? She asks for help moving her legs, and dreads being picked up in spite of all the precautions we take to be gentle.
Through the night, she comfortably slept, with only oral medication for pain though she insisted me joining her in her bed- a task not so easily accomplished anymore.
This morning during rounds, the doctor seemed amendable to us going home later today, but we are completely against that. We want to ensure that she can pee in a toilet, as well as handle oral medications only first- I don’t think that’s a big ask. She agreed that of course these would be handled prior to discharge… so we will see. She did make it through the night without intervention, and on orals only.
Amy hasn’t played with a single toy since surgery. That, more than anything else, shows how she is feeling. We’ve been keeping her distracted with the iPad. Hopefully today we can spend some time in her wheelchair, can play with some playdough, or color.
On the positive side, she ate some of her dinner last night!
Hi all! Today has really felt like a yo-yo. We were given an indication that we could probably go home… but she’s still using a bed pan. We dug our heels in. “We’re not leaving!” An hour later, she giggles and makes a joke. “Tinsel [our Elf on the Shelf] is so silly!” Maybe we can go home?
We got her up and into a wheelchair for the first time, that did not go well.
But then we went for a walk and had fun seeing the ward. She noticed the yellow robot had Daisy petals, just like a Daisy Girl Scout!
Back and forth all day, it’s been more than a little exhausting. The latest was being excited about going to the party, then two minutes later crying because it hurt, and she wanted back in bed. We did make it to the party though!
She got to play in the “snow” and hunt for things, she got a new friend (Crabby the kitty) and made a cute ornament!
But twice during the party, she asked to go back to bed, then changed her mind in favor of [activity]. The third time, she was done. So we left the party early.
Right now, she’s happily playing with playdough, and for the first time, I really feel confident about going home.
Transferring is still very difficult, but once in a chair or potty, she’s okay.
Very positive progress! We are presently on track (and comfortable with) a discharge tomorrow morning. ❤️ Fun Fact, she doesn’t have to be on continuous monitoring anymore! So now she’s being spot checked at vitals time. This time, Crabby the Cat got to have his blood pressure checked first.
See? There’s Amy! I miss her when she slides away in a haze of pain. 🙁
We headed down to the playroom to have some fun. She climbed out of her chair and STOOD UP. I nearly had a heart attack. Amy’s Dad snapped a picture and beamed. WOW. Just, WOW. This girl, she is AMAZING! Did she forget she just had surgery yesterday?!?
Lord… I need to do something about her hair! LOL
When we arrived back from the playroom they tried to flush her IV, but she started screaming in pain. The nurses made the call and decided to remove her IV. Before and after this process, I decided to tackle her hair with water, conditioner, and a comb, before the rats nest worsened. Hair detangled (That Was NOT Fun) and snuggled up with her stuffies, it’s was getting late. But she looked so sweet!
Do you know what day it is? It’s DISCHARGE Day! Amy had another great night, sleeping though it, only requiring Tylenol once. We had a healthy breakfast, and are ready to leave. Just waiting on final checks and paperwork! Amy has already chanted, “Home! Home! HOME!!!” several times today. LOL
Picture is worth 1,000 words.
Greetings from Palo Alto, somewhere between the hospital and the freeway! Her discharge was expected and smooth, and her only complaint was that it wasn’t fast enough, and that she needed to take another dose of the “icky” medicine. We already have all her medications, our drive looks short, and Amy can’t WAIT to get home… and has already fallen asleep. Thank you for all your thoughts and prayers. We are so grateful! This will be our final update to this post.
(For the original posting on Facebook, you can find it here, but it only viewable to my Facebook Friends.)