disability – Wholehearted Parenting Through Disability

Ana had her first surgery on January 7th, 2020 in order to get her into halo gravity traction. In case you are unfamiliar with this surgery, it is a relatively short procedure, approximately 20 minutes, in which a series of ten small holes are made in the skull and 10 screws are then screwed into the bone. The screws attach to a halo that is also attached to a piece of metal that hooks onto a carabiner which is connected to a rope pulley system that applies resistance to her halo.

She has to be in traction for at least 8 hours a day at the amount of resistance that is half of her body weight, which for Ana is 12.5 lbs. The purpose of the halo gravity traction is to prepare her for her big spine surgery in March. Since Ana’s spine is dislocated and it is compressing her spinal cord, it would be very dangerous for Ana’s surgeons to try to move her spine at all to reduce the degree of her curve when they did her surgery. Any change applied to the spinal cord like that would just injure her spinal cord even more and cause major damage. However, in halo gravity traction, gravity is used as a tool to gently stretch her spine and reduce the curve slowly over time. As a result of Ana’s dislocation, her spinal cord has a finite area in which it can function. The traction relieves the pressure her bones are putting on her spinal cord, which will eventually allow the spinal cord to form more blood vessels and begin to strengthen. Our doctors believe that this will create a much more healthy spinal cord so that when they do her surgery, she will have less of a chance of spinal cord injury and complete paralysis. As of now she is considered an ambulatory paraplegic, as she is able to walk with the assistance of her walker. Her surgeons have informed us that she is at high risk of complete paralysis with her upcoming surgery because of the way her spine looks now. However, if we do nothing her curve will eventually progress to the point where she would be completely paralyzed anyway. We are taking a risk by doing this aggressive series of surgeries, but we have determined that it is a risk we are willing to take, given that even if we did nothing she would be completely paralyzed at some point. Her dad and I have always known that complete paralysis was a possibility, even a probability, but we also know that she has the potential to live a happy and fulfilling life with or without the use of her legs. We have both come to terms with this fact and so we have chosen to try to save what leg function she does have left, understanding that only God knows what the outcome of these surgeries will be.

The day of the surgery we arrived at Children’s Hospital at 10:30am to check-in. Ana was being her silly self and lounging in the hospital wagon. We went upstairs to the waiting room and waited for them to call us back. When they came to get us we went into a little room where two nurses took her measurements and checked her vitals. Up until this point we had been telling Ana that she was going to get her “princess crown” put on, so as to make it less scary. At her pre-op appointment, all the nurses were calling it her princess crown and they gave her a sticker book so she was actually a little excited for her surgery. But once we went into the little room where they were checking her vitals, she started to get very nervous. Luckily Children’s Hospital has a play room for the kids in the area where you wait for surgery. We went in there and all her worries seemed to dissipate as she played with the toy kitchen. Then we got taken into another room to wait for the doctor. He came in and explained what was going to happen, as did some of the nurses and the anesthesiologist. It took about an hour for them to get everything settled, then they wheeled her off, still awake. You could tell she was nervous, but she was brave and waved goodbye to us as they wheeled her away.

Ana relaxing in her wagon before surgery

We went downstairs to grab lunch while she was in surgery. Less than an hour later I got a call from the doctor saying that everything had gone really well and that they were taking her into recovery. We went upstairs to wait for them to call us back into recovery. Once we got there she was still asleep on the bed, but she woke up shortly after we arrived. She was groggy and confused and was not happy that she had a whole new set of hardware on her head. She kept trying to pull it off while crying and screaming that she didn’t want her princess crown anymore. This was probably the most difficult part of this whole process was seeing her like that.

I finally picked her up out of the bed, which I think helped her calm down. She would fall asleep again for a few minutes and then wake up screaming. I ended up having to carry her up to her room while the nurses pushed the bed and all the attachments down the hallway next to us because she wouldn’t let go of me. Once we got to the room, I sat down with her on the bed and she fell asleep for a long time. She woke up around 6:00pm happy as a camper, I think because she was still quite medicated. She wanted to sit on the couch with her dad and look out the window. It was at that point that she told him, “Daddy, I like my princess crown, but sometimes it’s a little bit ouchy.”

The next morning her doctor came to see her a little earlier than planned. He had told me on the phone that they were going to need to tighten her screws the next day because the bones expand and the screws loosen, but I wasn’t expecting them quite so early. She hadn’t had her dose of pain killers yet and it all happened so fast that I didn’t think to tell them that they should wait until she got her next dose of Motrin. He and his assistant tightened the screws as quickly as they could, but it the look of pain on her little face was almost too much to bear. She squinted up her eyes as tight as they would go trying to endure the pain, and then she just broke down sobbing. It was awful to watch, and in retrospect I wish I had told them to come back later after she had gotten her dose of Motrin. After that she just wanted to be held and she wanted her daddy. Unfortunately he hadn’t gotten to the hospital yet because he also was not expecting them to come so early. So we packed her up in her wagon and went downstairs to wait for him. As soon as he came in the doors of the hospital he picked her up and she crashed out on his shoulder on the way back up to the room. She slept for a long time after that but once she woke up she was back to her happy self.

The next few days were up and down. She slowly weaned herself off pain meds after about 4 or 5 days, and we started increasing the amount of time she spent in traction, as well as the amount of weight. Some days were hard, others were easier. There were times that Ana didn’t want to get into traction and she would cry and yell at me and tell me that I was making her mad when I insisted that she get into her traction. Thankfully Children’s Hospital is full of kind volunteers, wonderful nurses and there are plenty of fun activities and events that the kids can attend. Ana got a visit from Miss Colorado that she couldn’t stop talking about, she got to meet Ms. Rodeo South Dakota and Ms. Rodeo Idaho, as well as the pony they brought with them. She got to do multiple crafts with volunteers that come to the hospital and we got to see a concert by a musician who came all the way from Estes Park. We also had visits almost every day from friends and family who brought us food, presents for Ana, and even a custom made princess crown and princess wand. To all the wonderful people who called, texted, visited, sent us positive thoughts and prayers, thank you so much. We couldn’t have done it without your love and support. We appreciate all of you so much!

Ana is home now and is doing so great in her traction. It has gotten to the point where she actually enjoys being in it and she gets right into her chair as soon as she wakes up. She has discovered how to swing off the edge of her wheelchair, and pick her legs up from the ground and spins around in her walker. We are still adjusting to life in traction, traveling with all the equipment has been a challenge to say the least, but we are figuring it out and doing the best we can everyday.

Today we saw Ana’s orthopedic surgeon. We see him every 6 months to take an X-ray and make sure that her spine is still stable. Those of us in the congenital scoliosis community are familiar with the phrase “watch and wait”. This is the phrase that doctors use to describe the recommended treatment for very young congenital scoliosis patients. “Watch and wait” might not sound like much of a treatment, and in fact when I first heard it, I thought it sounded a lot more like torture than an actual recommendation for treatment. This prescription is just like it sounds: watch the spine, and wait till it changes. Congenital scoliosis can take so many forms. It can change quickly, or it can stay relatively the same over a long period of time. Generally when patients are so young, it is difficult to operate on the spine. Most people are aware that when a baby is born, their bones are like cartilage all throughout their body. The way that spine surgeons secure the spine after surgery is with metal rods and screws. This becomes difficult when the bones are soft, as they are not stable enough to hold the screws in place. When Ana was first diagnosed, her surgeon told us that the optimal time for surgery would be between the ages of three and four. At the time it sounded so far away that I put off worrying about it. Going into today’s appointment, I thought about the fact that Ana turns three in December, and that the surgery discussion could be on the table. However, knowing that she was at the appropriate age for surgery did not necessarily prepare me for the news we received today.

CT scan of Ana’s spine, taken in March of 2017.

As we walked out into the hallway so the doctor could watch Ana walk, he told me that the degree of curve in her spine had increased by 20 degrees. It went from approximately an 80 degree angle, to a 100 degree angle. As soon as it came out of his mouth, I felt my heart drop into my stomach. I had to clarify and make sure that I was hearing things correctly, and he confirmed that it was correct. She has never had a change in curvature before, until today. Change in a spine that is already atypical is never good. We walked back into the exam room and he walked us through the surgeries needed. They would need to go in through the back first, and secure her spine in place using rods and screws. With a spine as complex as hers, they do not have the option to straighten it. After the first surgery heals, assuming everything goes well, they would go in again, this time from the front, taking a rib from her side and fusing it onto the front of the spine to create a sort of bone graft that would give the spine more stability. This is an extremely high risk surgery, with many things that could go wrong. The two biggest risks are complete paralysis, and infection. He said there is a 20% chance that she could lose all function in her legs as a result of this surgery, but the greater risk is the possibility of infection. He said that the hardware they put into the back would make the curve in her back even more pronounced than it already is, and since her body is so small, for some children, the hardware irritates the skin from the inside causing infection. If that happens they have to remove the hardware which can be detrimental, as it would destabilize the spine. The pro’s of doing the surgery soon, would be that we would stop the movement in her spine and try and preserve some leg function. He did say that at this young of an age, the spinal cord is more likely to heal and preserve some functionality, assuming that everything goes well.

Sitting there listening to the doctor explain our options, it took everything I had not to burst into tears right in front of him. I kept it in until he left, but walking out of Children’s Hospital, the tears started to come. I was holding Ana as I was walking out and she asked me what was wrong. I told her that mommy was just sad. She looked at me and said, “Mama, do you need an Ana hug?” I said that I did, and she wrapped her little arms around my neck and hugged me all the way to the car. When I put her in her car seat she asked if I was happy now and I said yes. She looked at me inquisitively and said, “But your eyes still look at little sad”. I agreed that they probably did, but that I would be okay.

Ever since Ana came into our lives, I learned very quickly that she was a much stronger spirit than I. I think that God gives us all challenges for a reason, to help us learn, grow and become better people. As I walked to the car with Ana’s arms around my neck, I realized the irony of the situation. I am not the one who will be undergoing multiple surgeries, yet she is the one comforting me. I only hope that one day I can become the mom she needs me to be. The mom that wipes her tears of pain, but also pushes her to try her hardest in recovery. The mom that listens to her vent her frustrations with her physical difference, but also helps her see all the many blessings in her life that she can be grateful for. The mom that comforts her when she gets down on herself, but also shows her the path to self love and acceptance. i’m so grateful that I was blessed with this little angel, who is helping me to be a better mom and a better person everyday.

Tag: disability

Surgery #1

Monday at the Orthopedic Surgeon’s Office