On Friday we had a first time appointment with a local pediatric orthopedic doctor - who is also a surgeon - this made me nervous. We had a discussion during our FHC revisit in November and everyone agreed that all our attempts at correcting Kevin’s left foot and walking haven’t made much difference and it is time to try something else like braces. We have been told that braces are not ideal because typically the problem is a neurological one and that is why we have spent so much time crawling and creeping to try to solve the problem. Braces can also cause the muscles used for walking to tighten and make it worse. If we decide to use the braces this would only straighten Kevin’s foot but because his achilles heel is so tight he won’t have the flexibility to get his heel down and so he would probably end up walking on his toes or the ball part of his foot. But we thought we would try to correct one of the problems and get another opinion.
Friday morning we show up to Children's Hospital, a place full of memories for me. During the appointment, the nurse got some general information like weight and height. We were surprised to find out Kevin weighs 68 pounds! In November, we thought Kevin had gained 5 pounds - it’s more like 10 pounds. Then a nurse practitioner came in to get some history. We explained to him why we were there and some of Kevin’s history. He consulted with the doctor and they wanted x-rays of Kevin’s foot and hips before the doctor came in to talk to us. Once the doctor finally came in to see Kevin, he basically just started rattling off foreign sounding words to us and what sounded like a very long list of procedures that he felt Kevin needs - surgery. The doctor wouldn’t consider the braces or any other treatment measures, like the myofascial procedure that FHC suggested. At that point I was just struggling to breathe and fighting back the tears. A friend uses this same doctor with her CP child and she had told me that with her child the doctor was conservative about surgery and preferred to try other options before surgery. So this made me think it was really bad. And it does look bad. It also caused me to second guess decisions we have made regarding Kevin’s treatment. The possibility of surgery is so devastating after all the hard work we have put in to try to prevent this very thing.
The x-rays revealed a dislocated hip, subluxation in Kevin’s left hip which is a significant concern. The doctor wants to do surgery on Kevin's hip, achilles tendon lengthening, and a few places on his foot and ankle - posterior tibia tendon lengthening, plantar fascia lengthening, brevis longus tendon transfer, and lengthening of extensor helices longus tendon. Ugh! He also wants to take out the Hyprocure pins that Kevin had placed to support his ankles last year. He also mentioned casting Kevin’s other leg during the healing process from surgery. It was a lot to take in.
Thankfully Jon was able to be there nearly the entire appointment. He has the analytical brain while I was the emotional one. We left the appointment with the doctor knowing that we wouldn’t be rushing into a decision and that we would need to get a second opinion with an orthopedic and also consult with some other professionals. It doesn’t feel right that this doctor met us this one time and could do surgery on Kevin next time he see him. It seems like there should be more to it.
By the time Kevin and I got home from the orthopedic appointment we had just a little bit of time to regroup before our appointment with Dr. Nemeh. I was hoping Dr. Nemeh would help me get some perspective from the orthopedic’s appointment. I am grateful that my friend Gina was able to come along for support since it was an especially trying day for me.
When Dr. Nemeh entered the room I told him that we had seen the orthopedic doctor that morning and he wanted to do surgery on Kevin. Dr. Nemeh immediately gave a negative response to surgery. But when I showed him the x-rays they had taken that morning of Kevin’s left hip he seemed to “change his tune” a bit (Gina’s words). He wouldn't commit either way about whether he thought we should consider the surgery but instead asked me what I wanted or thought we should do. The hip, is definitely something to be concerned about. Dr. Nemeh did remind me that Kevin’s foot was making progress since he started working on it. He also suggested that we should take pictures to help track this progress because it is easy to forget. It is clear that the bones that were protruding at the top of his foot have healed - which is good and gives hope. Dr. Nemeh spent a lot of time on his left hip during this visit. I had also informed Dr. Nemeh of the regression in Kevin’s walking during the month of November and that he had had several falls, which showed up in his diagnostic evaluation. At the end of the appointment, he encouraged me to continue the KT taping and to come back in a couple months.
Of course, we want what is best for Kevin and we will do whatever we need to help him. Kevin wants to walk. Surgery is scary and a big step but this may be what Kevin needs to achieve better walking and to prevent further damage to his hip and overall structure. But before we would even begin to consider surgery, we feel it would be wise to try some other intensive non-surgical treatments like traditional physical therapy to see if any progress can be made this way before surgery and of course more visits with Dr. Nemeh. We believe in hard work and miracles!
Our next step is an appointment with a physiatrist and physical therapist. A physiatrist is also called a rehabilitation physician. It is my understanding that they try to use other treatment options to avoid surgery and will work well with the orthopedic and physical therapist. I will also schedule a second opinion with an orthopedic doctor after meeting with the professionals I just mentioned.
It will be confusing for us to decipher through all the various opinions we will receive from those involved. But ultimately we will choose what we feel is best for Kevin. Surgery scares me but in the next breath waiting scares me too - potentially losing time that Kevin could be walking. But I feel we need to cover all our bases before make a big decision on surgery.
