Archive | June 2019

Femoral Leg Rotations and Parent’s cont.

PART THREE

I know it’s Thursday, almost towards the end of the week but I warned you in the beginning that sometimes my blog might be once a week or several times a week. It might just be this one.

This week has been wonderful, she’s doing leaps and bounds in therapy but we are having to get our things together and prepare for our 6-week post op trip back to Children’s Hospital. In the mix of all of that, I have a novel due next month, throwing my hat into the ring as a first-time publisher and working with some amazing authors from all over the world. I’ve been a little busy.

One of the things I forgot to tell you to bring for the hospital is clothing. We thought of only buying super soft shorts because we figured she wouldn’t want to have anything on her legs but nobody told us that the swelling in her hips and thighs would be so massive that her sizes wouldn’t fit. She’s normally a size 9 womens but she could only fit into my size 18 shorts. Yes, the swelling will be that severe. She went down to her normal size within 2 weeks but she couldn’t fit into her regular sized clothing until then. Thrift store, baby. You can buy some super soft shorts, sweats or even sun dresses for cheap since your kiddo will only be wearing them for less than half a month. Save your money for nice shorts in their size because that’s all they will be able to wear during physical therapy.

The other thing is to bring something that they are close to, that comforts them. Even though she’s fifteen years old now, she wanted her stuffed black horse, Midnight. The entire situation is so scary for them. Heck, it’s scary for us and we aren’t the ones having our legs broken and rotated.

Smart phones, tablets and pads are fantastic! There’s Wi-Fi in the hospital so Madison could watch her Netflix or Hulu while I emailed family and friends or watched my own shows. Believe me, the days are long when your child can’t walk very far. The surgeon had told us that she might be there for three days if everything went well but to prepare for five, just in case. Her knee gave our three times on the Wednesday we thought we were going to be released so they kept us until Friday. By the end of the week, Amazon Prime video was my best friend.

I’m sorry this one is short. I’ve got to get supper done and the girls to bed early. Madison has therapy in the morning, early, so sleep is our friend. I know it’s 4th of July celebration next week but I promise, I will still more information!

Keep the love flowing, keep the positive thoughts open and have a very blessed weekend!

Femoral Leg Rotations and Parents Part 2

PART TWO

I didn’t want to leave anyone hanging over the weekend so I’m posting today. Today has been a super rough day. She had physical therapy first thing this morning and had difficulty even moving her legs off of the bed to get up. My vibrant, bouncy daughter is shuffling along like she’s ninety years old. Through the tears she smiles, never wanting anyone to feel uncomfortable around her. She is truly amazing.

So how is she walking with two broken legs? Because of the steel rods they inserted down through the center of her femurs, it allows her to relearn how to walk without having to wait for the bones to heal. She was up and walking the day after surgery, albeit it was only a couple of steps but pretty impressive.

What to expect if your child has to go through the surgery or surgeries. Physical therapy!! Get your child into physical therapy at least six weeks before they have their surgery done. Muscle, tendons and ligaments will need to stretch with this rotation, regardless of the degree of rotation so if they are flexible and limber before the surgery, the less damage is possible. It also helps rebound quicker after the surgery. Nerve endings. We were told that nerve endings do not stretch. They don’t have play in them and if they are stretched too far they snap, which can result in temporary or even permanent nerve damage. Madison’s rotations were a huge 25-degree rotation on each leg, five percent more than what they had anticipated. She has ZERO nerve damage. Doctors swear that the physical therapy couldn’t help that part but I don’t believe them. They don’t know everything, as we’ve already learned. I’m a huge advocate for the physical therapy before and of course, after.

Things you are going to need. A walker, a wheelchair, a potty chair for over the toilet, a shower chair and a bedroom with no stairs. They will tell you that your child will be getting up and walking right after surgery but it’s only a couple of shuffling steps. Madison struggled just standing up from the hospital bed, let alone walking very far. One of the other things we got was a belt. It’s specifically made to go around their chest and under their arms. It is wonderful for helping them stand since their balance is non-existent. I recommend gathering these things and bringing them home before the surgery. We drive a Nissan Rogue and live five hours away from Children’s Hospital. We were set up at the Ronald McDonald house just a mile from the hospital (though this momma slept on the pull-out sleeper in Madison’s room) and if there are any donators out there, please consider donating to the Ronald McDonald houses. They are truly a blessing for families.

Anywho, I digress. The four of us drove down for Madison’s surgeries and they had her equipment there for us to take home. There was so much that my husband had to rent a truck and he and our youngest daughter had to take half of it home with them. There was no way we were going to fit the equipment, luggage and bodies into that SUV of ours.

Also stock up on lots of things for them to do in bed. Madison spent a good amount of time playing her games online with her friends but even that gets old. She received a care package from a sweet friend that had crossword puzzles, thread to make friendship bracelets, spirograph and other fun goodies like that. I also bought her some modeling clay to make some sculptures.

I know I will have more tips and ideas to offer. Things that you think about after this is already done so if I can help you before the surgeries, then I’ll be a happy camper.

One other thing that I’d like to point out. You are going to go through a lot of emotions regardless if you’re a man or a woman. My husband wasn’t freaking out over the surgeries themselves but over the healing and pain afterwards. I was freaking out over the surgeries (what if something went wrong and she didn’t come out of anesthesia, lost her legs, lost feelings, etc. Mom brains are crazy) so it was great when we talked about our fears and concerns with each other because it allowed us to be strong during the times when the other person felt weak. So definitely lean on each other. You may not understand why the other person is freaking out over what you consider fine but the same may go for your partner. Just understand that you have different fears and concerns and you can be strong together.

Have a fantastic weekend and we will talk to you next week!

Femoral Leg Rotation and Parents

I’m getting past my fear and my anger and going to post this blog to hopefully help other families who are going through or maybe prevent this from happening to their child. This blog is not going to have a set time for release. It could be several times a week or just once a week. It honestly depends on how our healing is going (and I say ours because as a mother, I’ve grieved with her, I have grieved for her, I have raged against the doctors who wouldn’t listen to me and I’ve come to acceptance, all forms of healing). My daughter has super good days but she also has super bad ones so I need to be there for her. With that being said, I hope that this can help others who are going through this.

What is this blog all about? Well, this blog is about doctors not listening to parents. This blog is about parents learning to take control and having a voice for their child. This blog is about what to expect if your child has to go through this procedure. This blog is for venting and also offering support in the knowledge that you are not alone. Most importantly this blog is to let you know to accept all of the emotions! Don’t let someone that you shouldn’t be scared, angry, upset, worried. DO feel those things! You are supposed to! God, the Universe, whoever you believe in (or don’t) gave us emotions to experience. NOT JUST THE GOOD ONES! So accept those emotions, they are there to guide you, let you know you are still alive and they are a part of you.
So a quick rundown because I’m sure our stories are going to be similar. When Madison started walking, my husband and I noticed right away that her feet weren’t right. We took her into her pediatrician and he told us that she was pigeon toed and would probably grow out of it. We accepted that and as with life, other things came up and we couldn’t address it again until she was six. We were living in another town at that point and took her to the pediatrician there. We were told similar stories. She was pigeon toed; she would grow out of it. It just didn’t feel right so we took her to a pediatrician in Steamboat Springs who told us she was double jointed and she would excel at sports. This explanation sounded even worse but every doctor we took her to up there told us there were no issues. She would be fine.

Fast forward to her now being thirteen years old. She’s still having issues with tripping, wearing shoes out irregularly and just being uncomfortable. It’s documented on all of her yearly exams but nope, there’s nothing that can be done for it. That summer, she stopped riding her horse as much. When we asked her why, she said her knees and hip hurt. We knew it was related to her legs and took her into her pediatrician and demanded that we be referred to an ortho. The orthopedic doctor took x-rays of her legs, examined her and said that one leg was slightly longer than the other one and she needed to have a lift put in her shoe. It didn’t sound right but at least we weren’t being told that it was normal.
She wore the lift for a couple of months but got progressively worse. I refused to take her back to that orthopedist, frustration that nobody was taking us seriously was mounting. Finally my husband took her in to her pediatric doctor and was adamant that something had to be done. They prescribed physical therapy and the following week he took her into her appointment. I still don’t have this gentleman’s name but I love him. He made her walk, took one look at her and said he couldn’t do anything for her. The turn was NOT in her lower legs, it was in her upper legs and no therapy would help her. He recommended she go to the gait clinic at Children’s Hospital in Aurora. The appointment was made but we had to wait three months before we could get in. In the meantime, the pain in her hips were getting worse and she stopped riding her horse.
The staff at Children’s Hospital was amazing and they had a team of ten professionals to go over all of her tests and videos. No stone was going to go unturned until they had answers. Unfortunately, we wouldn’t get the answers until January and it was the worse news we could expect. Both of her femurs were twisted. Because of this deformity it was causing undue stress on her knees, hips and spine. Degeneration was already happening and surgeries were recommended immediately. Unfortunately, the only surgeon who is properly qualified and experienced to do the surgeries was booked until May 20th, 2019. We would have to wait until then to get her surgeries done.

Here’s where it gets interesting. With this type of surgery, they have to break both femurs (thigh bones) in half, rotate the lower legs until they are in proper alignment, slip a titanium rod down through the center of the thigh bones, screw in bolts/screws into the hip at the top and also above the knee to hold the bones and rods in place until the bones heal. Because her muscles, nerves and tendons will be rotated also, she will be learning how to walk all over again. Her brain has to relearn how to talk to new muscles to allow her to learn balance, movement and stability. We were basically going to have a one-hundred- and fifty-pound toddler.

The part that makes me so very angry, even to this day; if any doctor had listened to me, if I hadn’t accepted their bullshit and had fought for my daughter, they could have put braces on her legs that she would wear at night that would have corrected her thighs. NO SURGERY! But because her bones have already solidified, the only way to correct it was surgeries. And they wanted to do both legs at the same time. Great.

Another problem that we were fighting with was that because it had been gone undiagnosed for so long, her left hip was already being worn irregularly and there was damage to that ball and socket. The surgeon was hopeful that once her legs were put into proper alignment that inflammation would go down and hopefully, we can reverse any kind of injury without surgery but we won’t know until she is completely healed, which is a 9-12 month process. This isn’t a sprint, that is for sure.

I’m going to wrap up this post for now. I need to get my daughter up to the bathroom, feed her and give her the pain meds she’s on but I promise I will next write about the surgery and hospital experience. There were things that we weren’t told that I think all parents need to know. Remember, if your child is pigeon toed, walking irregularly, their gait is off, go get a second opinion. Maybe even a third, fourth or fifth. If it just doesn’t sit right with you, follow your gut. You were given emotions and instincts for a reason.

And any doctors out there reading this, a little piece of advice. ALWAYS listen to horse moms. We have been trained to watch with an eagle eye if a horse’s gait is off. We know immediately and instinctively that something is wrong. We have that same gift with children. Don’t blow us off, we might actually know something that you should listen to.