One week post-op follow up

    Today we had Amaya's one week post-op follow up. It was a bit hectic managing her wheelchair and the suitcase carrying the magnet, but with the kindness of strangers we managed. We got to see Dr.Nelson,  even though we weren't scheduled to see him, he came in just to see Amaya. He is incredibly kind and thoughtful. He gave us info, looked her over and then gave us instructions. As I scrambled to write down all the instructions, he stopped and wrote them down on a piece of paper for me. He gave us his cell and email so we can reach out with questions, issues, problems and to send him x-rays. I'll be honest I had a moment today where I was a bit nervous to know we would be undergoing a lengthening while being so far from the clinic and Dr. Nelson. But after the visit I was reassured and felt good about it all. I know that even though we will be far we will have plenty of support and help. 

Dr. Nelson told us that...

• he was happy with how Amaya was doing and how everything was looking (including her bruise) 
• he corrected the 10 degree deformity in her femur (it was knocked in. Amaya says she already notices a difference!) 
• he went in through the knee because of the deformity 
• he lengthened 1 mm once the device was inserted 
• the Precice device can hold her weight so its ok if she puts her left foot down, but she shouldn't walk on it because it can loosen and damage it
• once he removed the ace bandage from her knee she had a bit more range of motion that increased as the day progressed 

Whats next...

• he ordered us crutches so she can begin to use those
• she will be non weight bearing for 3 months (crutches or walker)
• she should be constantly working on either bending or straightening the leg 
• she will need physical therapy 3x's a week for a month 
• we will begin lengthening on Friday 2/4/22
• we meed to reinforce the line on her leg as needed
• we will lengthen three times a day (.33 ml each time)
• we will lengthen for 19 days 
• we'll get x-rays at 2 and 4 weeks after starting lengthening (and email them do Dr.Nelson) 
• once we're done lengthening then we will get x-rays once a month 
• it'll take about 2-3 months for the new bone to harden 
• she can begin to shower and cover wounds as needed

Amaya finally got some frozen yogurt. Yum!

On the way into the appointment we were margin her wheelchair and the case holding the lengthening magnet. Thankfully several kind people offered to pull the case os I could focus on pushing Amaya. 

Dr. Nelson removed Amaya's bandages without a hesitation and she didn't even flinch! She's got six new incisions! Three are pretty small (about a quarter inch), one is medium (about an inch and a half) and two large ones (about four inches long).

Here's a top view. You can see the incision in the knee; that where the rod was inserted into her femur. The small incision is where the screw was put in. The long one on the side is where he released the scar tissue she had from her previous lengthening surgery. The purple marker shows where the magnet is inside her leg and helps us know where to align the external magnet to lengthen. This has to stay there for the entire time we are lengthening her femur. 

Here's what it looked like before.

Surgery x-rays

    Here's a look at the x-rays taken during the surgery. They show the osteotomy (the break in the femur; it's just above her left knee). It looks like they inserted the Precice devise from the knee instead of the top of the femur. 

This is a side view of her knee. You can see the break in the femur. 

This is the rod inside her femur, which she has fondly named, Kimble. 

So meet Rod Kimble. You can also see the small rectangle in the rod, 

this is the magnet in the rod. That and the external magnet will be used to lengthen her femur.

The real Rod Kimble, from the 2007 movie Hot Rod. 

Here's a top look at her femur. 

It shows not only the break but two of the screws used to hold the rod in place. 

The top of the rod and the screw thats holding it in place. 

From what I can see it looks like she has four screws in total. 

One on top and three on the bottom.

I've lost track

    I've lost track of the days and how long its been since surgery. I have to look at a calendar to confirm. With the calendar I can tell her surgery was Tuesday the 25th and today is Sunday the 30th. So we're going on day five. I believe she was released on Thursday afternoon. She had made so much progress that second day that her orthopedic, anesthesiologist, and physical therapist all agreed she could go home. Like the orthopedic resident said "medically there's nothing wrong with you." He said the biggest thing would be to get her pain managed and moving safely. The epidural was removed early Thursday morning and within an hour her legs were starting to "wake up" and her strength was returning to her right leg. She was able to move to the edge of the bed, stand, walk (she walked fifty feet on her first attempt!), and sit back down safely. She continued to practice throughout the day as well as bending her left knee (she could barely do it without having excruciating pain but its important to have it move so she doesn't lose her range of motion in her knee). Her anesthesiologist was impressed with how healthy she looked and how well she was managing her pain. I think it helped her to hear from the orthopedic resident that, "The pain won't be fully removed like it was with your epidural. I want you to have a realistic expectation of what your pain will be. You will continue to have it, but it's about managing it and having it be tolerable." That may not be a direct quote, but it's the gist of what he said. Since her pain was managed, her strength regaining and she was asking to be released (the interrupted sleep was wearing her out!) I felt good to leave. 

    The forty-five minute drive to Paco's (Amaya's grandfather) house was pretty painful for Amaya. She said she could feel each bump on the road in her leg. It was sad to hear her moan and yell out in pain. Her first night went pretty well. She woke up a couple times but those times aligned closely with the time for pain meds so that limited her interruptions. We've been massaging her feet, and head which have helped her a lot. The first night she slept for five hours straight, so did I. It was amazing! She was so happy to not have to be woken up for vital checks or by the crying baby in the room next door. 

    The past two days she has improved immensely! Her right leg is stronger, her pain is managed, she's been able to sleep for longer stretches and her mood is holding up! She's pretty steady as she moves and stands but there have been a couple items when she's lost her balance and fallen over. We are always close to her and were there to catch her each time. Josh drove home yesterday and safely made it home to be with Lidie. He returns to work Monday. Amaya has a follow-up appointment Tuesday and will begin lengthening then. Her appointment was scheduled with another orthopedic doctor but Dr. Nelson said he'd make sure to see her. He was so happy with her progress and wanted to make sure to check in with her to see how she was improving and review the next part of her lengthening journey. Then Wednesday we'll fly home.

    Last night was rough, Amaya woke up with intense pain after midnight and a deep longing to be home in her own bed and room. It was a reminder that we still have a long, rough road ahead of us. This morning she's been FaceTiming with her sister and cat, that's been a huge help! 

Here's some photos from the last couple of days...

Amaya and I managed to sneak in a nap before she was released. 

She was worn out from a visit with the occupational therapist and physical therapist.  

Amaya's view of her room

Amaya's view on the way out of the hospital

Josh and Amaya heading out!

Woohoo we're out!

 I am incredibly grateful for the excellent care 

Amaya received at the Children's hospital. 

Josh and Amaya cuddling

Amaya managed to put some sweats on and walk throughout the house.

Amaya has a bruise on her left thigh. 

It's been changing colors and spreading each day. 

We're assuming that means its healing but 

it does bother her to lay on it especially when she sits on it.

We've been having Amaya do her PT homework (10 knee bends 3x's a day).  

On Saturday Amaya bent her knee more than she has since her surgery Tuesday.

The first twenty-four hours

* I'm writing this with about five hours of very interrupted sleep so please forgive the typos.     

It's been about 24 hours since Amaya got out of surgery. I can't believe it. Time seems so strange. It's like a combo of Vegas (where clocks don't exist), the Twilight Zone (where things are strange) and Groundhog's Day (where things keep repeating). It's a blur, a wonderful, amazing, painful blur.

    We checked in at noon yesterday. Amaya went back for surgery about four and they were done about seven. Dr. Nelson said everything went well and as well as he had hoped. He released the scars at the top and bottom of her femur (so she's got two long bandages there). He put the rod (which she's named Rod Kimble) in through her knee so she's got an incision above the knee cap, plus about four small incisions where the screws were put in to attach the rod to her femur.

    Recovery was rough, she was in a lot of pain and it took awhile to get her pain under control. She was moved to a room about ten p.m. in the intermediate unit (because she has an epidural in). She fell asleep about eleven and was woken up at two and five to check her vitals and get new medication as well as to be moved so she doesn't develop bed sores. 

    It was a long night. I woke up at two a.m. and was so confused. It was as if I had the longest nap of my life and simultaneously the shortest nights rest ever. I slept until five and then stayed up after that. She took a nap before the orthopedic resident came to check in on her, he said she was doing great! She took a quick nap then was greeted with to back to back visits. First Dr. Nelson came to see her; seriously this guy is amazing! His resident already did, so he didn't have to but he choose to make sure she was doing ok. We will see him next Tuesday at her post-op visit. Later we had a visit from physical therapy (its super important to get her knee moving; to maintain her range of motion. And its helpful to do so while she still has the epidural in) then occupational therapy, then breakfast, then child life specialist then the anesthesiologist. Phew! 

    Today was full of so many things...there were moments of joy and triumph, moments of pain and disappointment and heartache and so much kindness! 

    Amaya did really well at PT and OT (all things considered). She was disappointed, sad and frustrated that she couldn't stand and then walk to her wheelchair. But it's very tricky because she can't put ANY weight on her left leg. Since she still has the epidural in her right leg was weak, wobbly and what her friend calls "noodle leg." It was so helpful for her to have a friend who's had the same procedure share their recovery with us. The physical therapist told Amaya the because of her right leg she can not safely use crutches (at least not right now). She suggested we try a walker but that was also too difficult. This was very heartbreaking for Amaya. After our friend reminded us that the first three days post-op are the hardest and that the 'noodle leg' will not last forever. And she reminded us (and Amaya) that she's undergone a pretty traumatic procedure (picture drills and hammers in her leg). That helped lift Amaya's spirits. Later they lowered her epidural dosage so she began to regain feeling in her right leg. This should help her regain her feeling and strength. She's a rockstar! She did all her PT homework (sitting up, bending her left knee, stretching the right leg and regaining strength in it) she pushed through tears and wouldn't give up! Seriously she's amazing! 

    We heard they might try to release us tomorrow or Friday. At this point I think I prefer Friday, she still is in pain and her right leg isn't stable enough yet. But we'll see how the night and tomorrow goes. 

As I sit next to her typing this she just whispered, "Thank you mommy, for everything, good night." So to all of you who have reached out with love and support, thank you, for everything, good night.

Amaya giving a peace sign before heading back into surgery. She was in good spirits! 

                                                       

                    Amaya being wheeled back into surgery. The most painful moment for us as parents. 

                                                            Ugh, it's heartbreaking. 

The anesthesiologist told Amaya, 

"it's the quickest nap you'll ever have. For your parents, not so much." 

She wasn't lying. Those three hours felt like days. I felt like a piece of my heart was missing. 

                                                        

                                                        Watching the board to see updates!                 

                                                    

                                                    woohoo! It was time to go see Amaya!

Josh standing next to the case holding her magnetic tool that works with her internal lengthening device. 

We got an impromptu lesson on how to do use it in the hallway before we could go see Amaya. 

Here's sweet Amaya starting to feel like herself again after a long painful time in recovery. 

It took several hours to get her pain managed in the recovery room (It took a combo of drugs in her IV and epidural to finally get her calm). Then instantly fell asleep. 

Getting her settled into her room. 

Once she was settled she got some water and they offered her anything to eat she wanted. What did she ask for? Vanilla pudding! She loves hospital pudding. It holds a special spot in her memory. 

Once her appetite came back she asked for a post-surgery late night snack...curly fries! 

After a long night she Face-timed her sister and Cocoa (her cat) first thing in the morning. 

What a huge boost to her mood! We miss having Lidie here with us. But with covid restrictions and surges it was safest to keep Lidie at home with our family friend.

After doing some PT she did OT as well and managed to give us a smile. 

PT came in for two seperate sessions. It was such hard work! 

Best part of being in a children's hospital...the kid perks! The child life specialist brought in a wii system where she proceeded to beat Josh at every game. And she was able to watch movies. 

They also brought her a fidget and stress ball.

Post physical therapy tears...ugh. 

She got a nice pick me up delivered today...a ballon, card and flowers from 

her Tia Hillary and honorary aunt Terra. 

Night before surgery

    The last few days have gone by quickly. We did the last minute preparations to drive down, make sure Lidie was set up and things at work were covered. Saturday we began the twelve hour drive down. We spent the night in Oakland with a dear family friend, Lyn. It was nice to break up the trip in a calm place surrounded with love and support. Sunday morning we met Ade for some coffee before she drove to our house. She's a family friend who will be with Lidie for the week. Sunday we continued on our way. After a stop in LA for some yummy vegetarian food and record shopping we made it to Josh's dads in the evening. We were tired but doing well. 

    Today we took care of the final pre-op things; a covid test for Amaya, got blood drawn and then made sure we knew how to get to the hospital (they've undergone a major remodel since the last time she's had any surgeries there). The covid test went by fine, but the blood work, well that wasn't as easy. Amaya is NOT a fan of needles or blood being drawn. She had a bad experience during one of her early surgeries and she's hated it ever since. Even though she was prepared and "ready to get it over with" so she could have her surgery it was still challenging. She got nervous and anxious as soon as she sat in the chair. The phlebotomist was patient and tried to reassure her that it would be quick, but that was no comfort. As soon as he tied the band on her arm she squeezed her eyes tightly. I gave her my hand which she squeezed just as tightly as her eyes. I was saddened to see the tears stream down both her cheeks. I rubbed that sweet little hand and tried to comfort her as best I could. Thankfully it was all done in a minute or so. 

    We spent the rest of the day keeping her busy and distracted. Josh and Amaya even went to watch a movie with Paco (Amaya's grandpa) later. The two hour distraction was a welcomed respite for her. While they did that I ran some errands. And stoked up on clear liquids that she can have in the morning (apple juice and 7 up). She may not even want them, but I want them available just in case she does. 

    Tonight she's allowed to eat until midnight (pretty sure she won't eat anything else) then can only have clear liquids until ten a.m. tomorrow. We check into the hospital at noon. Then we'll start the registration process, get her admitted and into pre-op. We don't have a surgery time yet as it depends on the surgeries before her. Since she's on the older end the younger kids will go before her.

    These past few days have been a blur, but the one thing that is clear is that we are loved and supported. We have been showered with thoughtful cards, goodie bags, books, treats, listening ears and many well wishes. We are incredibly grateful for the love and kindness that has been shown to us. Thank you all from the bottom of my heart.  Here's hoping for calm night and morning.

He gave her a band to wear until she's admitted tomorrow. 

Her pre-surgery ritual...eating a Big Mac 

(we substitute our own veggie patties in them). Its nice to see her smile! 

Less than a week away

      It's hard to believe Amaya will be having her surgery in less than a week. A few weeks ago we were worried that with the covid surges they might cancel or postpone her surgery. Amaya was very nervous about this. She's been looking forward to getting some pain relief for quite awhile that just the possibility of it being postponed increased her anxiety. I called the orthopedic scheduling department and they reassured us that they weren't planning to cancel Amaya's procedure. They said they are postponing some elective surgeries for adults but at this point none for children. Amaya was quite relieved and it was nice to have some answers and a definite plan. 

    We've been busy preparing for our trip and our time away from home. Its quite different having a surgery when you're less than an hour from home to one where you're twelve hours away. This time around Josh, Amaya and myself will be going along. Lidie will be staying home with a family friend and continuing to go to school.

    At this point we leave in three days. Yikes! We will pick up our family friend from the airport who will be staying with Lidie and giving her one of our cars to use. Then Sunday we will continue our trip to southern California. Monday Amaya has to have blood work done and then a covid test. With less than a week to go Amaya is feeling good. She's not nervous, anxious, scared or worried. She's just relieved to be getting it done and taken care of. I'm so glad she's in such a good headspace and ready for it. She's such a strong kid and handles all this with such strength and calmness. 

    This past weekend Lidie got sick with a minor cold. I made sure to keep her masked and away from Away as much as possible. Then Sunday night I got a fever and had to stay home for two days. I was bummed to have to miss work so close to an already planned absence but it was unavoidable. When I got my fever I was so worried that I would give it to Amaya and jeopardize her surgery. I've been wearing a mask around her, even at home. We've all been taking vitamins and staying healthy so it was disappointing to see Lidie then myself get sick. I'm so relieved Amaya is doing well! We're working hard to keep her that way.

    I had the pre-op appointment with the anesthesia department yesterday. It went well; we reviewed information and went over some of the possible complications and things we need to do (blood work and covid test, and other general instructions). The phone call was pretty much the same as the in person ones are. Direct, matter of fact and informative. Once I hung up I felt my body tingle and my heart ache. It's hard to describe. The surgery just felt so real and soon. I could feel pain inside me start to rise. It's pain that comes from deep within. The part of you that as a parent would do anything to prevent your child from being in pain or having to suffer. It's knowing that she will and that you are powerless to remove it. Its wishing she didn't have to deal with any of this, yet being honored to be her mother to be here to help her. It's knowing that there will be tough moments and days and remembering all the pain of the past that she's endured. Before I knew it I was crying. That ugly uncontrollable crying that doesn't go away and comes so quickly you can't stop it. I didn't fight it, I knew it was in there and just had to come out. I was aware that I was feeling so much and so intensely yet couldn't put the words to what I was feeling. I was speechless. I cried and cried until I finally stopped. The great thing about crying is that its healing and expresses the feelings that have no words. Those complex, multi-layered feelings that we're not sure how to describe. I sat there relieved and focused on all the good. Theres a lot of it!

For the next few days we are working to keep Amaya healthy, safe and her spirits up. Lidie sprained her ankle yesterday at basketball practice so we're masking sure she's okay and trying to spend as much quality time with her as we can. She's on crutches so its good practice for us all. She even used Amaya's shower chair and said it worked nicely. And I'm trying to rest and get better (I know I will need all my strength next week). Then we need to finish our to-do list, pack and start our trip down south.

We're grateful for all the good thoughts and love. Thank you all.

Limb Lengthening

Its pretty amazing that you can lengthen a bone. Actually you don't lengthen it, you grow it. Amaya grew  new bone. When she was six years old she grew 3.2 inches of new bone and soft tissues. It was an amazing experience! At times painful but also filled with moments of strength. It is amazing to write that, 3.2 inches! 

If you're not sure how limb lengthening works here's a bit of what I know. Typically in other surgeries they do the procedure to correct, add or remove something then within a few days or so you being to recover. Lengthening is different in that it's a process. The initial surgery is to break the bones that will be lengthened and to insert the device and then the lengthening process begins. It takes time to complete the lengthening and to heal from it.

There are three phases to lengthening latency, distraction and consolidation.

Latency phase...there is a pause in the process to allow for rest. This happens once the lengthening device is inserted and lasts about 5-7 days prior to beginning the lengthening process.

Distraction Phase...this is the gradual process of pulling apart the bone. New bone (regenerate bone) is created in the space. The bones are pulled apart slowly (about 1 mm per day usually done in three or four times throughout the day). As the bones are continually pulled apart new bone is created, and soft tissues grow (blood vessels, skin, muscles, nerves, etc). Frequent x-rays are important during this phase so that bone isn't created too slowly (if so then the bone can begin to harden prematurely) or too fast (this can lead to unhealthy bone). Patients must have regular physical therapy to help grow soft tissues and to ensure that range of motion isn't lost. 

Consolidation Phase...during this phase the new bone begins to harden and calcify. This can take about twice as long as the distraction phase did. Weight bearing is usually increased during this time to encourage healing. The lengthening device is still worn during this time. 

Last time Amaya had an external fixator to lengthen her bone. She grew 3.2 inches, had physical therapy nearly every day and she wore her fixate for seven months. Below is an x-ray of Amaya's femur & fixator from last time. 

This time Dr. Nelson will be doing a lengthening using the Precice nail technique. Rather than an external fixator she will have an internal rod. This should be much easier and less painful. The internal device is much more comfortable has no pin sites (basically open wounds we had to clean and dress daily. This was the greatest source of pain for Amaya last time). This time she is only growing 2 cm (about .78 inches) so that is a much less time to lengthen. We can lengthen 1 mm per day so that's 20 days to lengthen. Then it should be about another month or so to consolidate her new bone. She will wear the device for about a year and then will have it removed next year (and he will work on her knee then). 

Dr. Nelson has created a video showing how the Precice nail is inserted and he talks about how it works. The video has a clip of a real surgery so if you're a bit squeamish you might want to skip through that part (3:45 to 8:40). I'll be honest it was much easier for me to watch this prior to having Amaya's surgery scheduled, now that it is I can't bring myself to watch it. Back then I found this informative, helpful and interesting. Now it makes me squeamish and emotional so I've stopped watching it. I'm glad I watched it before so I know what will be happening and how he will do it. 

If you'd rather skip the video here's some photos that shows what it looks like. 

All these pictures are from the Int'l center for limb lengthening at Mt. Sinai and can be viewed at limblength.org. They also have other videos and information that are pretty helpful especially if you're going to be starting a lengthening soon.