Tomorrow is the big day. Bright an early we will be going to the hospital and Nina will have a Selective Dorzal Rhizotomy.
Today was a day full of doctor appointments and to go over all the procedures that will be taking place.
First, we met with the Orthopedic surgeon and he went over the gait lab test results with us. We actually got to look at the charts and see what her body is doing. It was really interesting to see where she is at compared to typical children. We saw what we knew, that her left side is a lot stronger than her right side, that her steps are really short, and that she walks really high on her toes. Actually, her heel cord is so spastic, that it did not even register on the charts...no wonder she has no balance and really there is no way she could have ever walked independently this way. She is not only high on her toes, she kind of even "bends over" them.
From the orthopedic standpoint, this rhizotomy will dramatically reduce the number of surgeries she would have had without it. After the rhizotomy, IF we need to lengthen her muscles or tendons, we might just need to do it once, without the rhizotomy, we could be looking at doing lengthening of the same muscles maybe up to 3 times (because of her severe spasticity). Her bone deformities will have to be addressed, but the rhizotomy will help postpone when this needs to happen.
We then met with the surgeon, and he explained with detail what is going to happen tomorrow. They will remove a small section of her vertebrate so that they can look at her nerves. They isolate the nerves and they test one by one. Every nerve has roots, and if they have to cut some roots in a nerve they do not cut them all, but up to 40-60% of the roots.
Nina's amazing, incredible, wonderful Physical Therapist will be in the OR during surgery. She knows Nina best and she is an incredibly caring person. Knowing that she will be there gives me great reassurance!
Following the surgery, Nina will have to lie on her back for 24 hours. Her head cannot be above the incision site in order to avoid spinal fluid to leak. She will be in so many pain meds and sedated, that we are praying that she will sleep most of the time! Now, I have never had an epidural, but she will have an epidural and catheter until Sunday.
We thought Nina would have to be in ICU for a couple of days, but that is not the case. She will be in the regular pediatric floor until she is ready to be moved to rehab. Best case scenario, she would be ready on Monday...we will be happy if this happens by Thursday. Either way, it is incredible that she will be up and moving by then...
Which brings me to the next part, because "up and moving" will not happen as easy as it sounds. We were told to expect Nina to be very weak. I heard that from other parents and now also from doctors. She will have to re-learn to do everything again. Sitting, standing, moving her legs. She has been able to do this mainly because of her high spasticity, once it is gone, her muscles will get to work properly for the first time. Just like babies take time to learn to do all these things, it will take time for Nina. Hence the intense physical therapy to follow.
And to finish the day, Nina got her very own wheelchair to keep! The one she got to chose a color for (sparkly blue) and the one that she will get to use for the next 5 years or so. Pretty exciting!
The picture bellow from St. Louis gives you an idea of what this surgery "looks like"
We appreciate your prayers as Nina goes into surgery. Please pray for the surgeon, pray for Nina, and pray for us. I have heard time and time again that parents have a harder time than the kids. I believe that!
Thank you for your wonderful words of encouragement and for all the support and prayers that you have given to us. We truly are thankful. It is so incredibly reassuring to know that Nina is going into this surgery covered in prayer.
I will update as soon as I can.