The Decision

These past few weeks have been an emotional roller coaster. Its been very hard to stay positive and to basically be put in the task of making a medical decision when we are not doctors.

We saw three top pediatric orthopedist surgeons, and got three very different opinions.

Dr R - is our original doctor. I think I detailed what he said, but just to recap. He wants us to perform an adductor tenotomy. This will give him more range of motion- but then he wants to surgically place in petrie casts. These casts will be worn for approximately six weeks and will keep his legs in a splits position with a pole between his ankles.

We then went to Dr. K who works out of a top orthopedist center in Chicago. She was so nice, had amazing bed side manner, and gave us the easiest option of the three. Do the adductor tenotomy, and then only wear a brace that keeps the legs apart at night. Though that appointment took us well over three hours, I left smiling thinking there was a more positive and easier treatment.

Lastly we went to Dr. J.  He is probably the most connected and in the know on Perthes here in Chicago. He is a part of an International perthes study group, has kids coming into his hospital all the time, and knows all the research on Perthes. He was also so kind with Nochy and though his hospital was a shlep and expensive to get to and to park and I was exhausted by the time I reached his office- he really seemed to know his stuff.

He said two things. One that in order to confirm his recommendation he would need to a specialized MRI with contrast dye to see how much femoral head is involved (it's amazing all the new words in my vocabulary). But he thinks that will confirm that Nochy needs a osteotomy. Which is a procedure where they cut the bone, top it in to the socket, and then put plate and screws in hold the socket in place. This procedure is the most tried and true method with Perthes. Its been researched, its been done dozens of times, and it gets the job done. There would be no cast or brace. Just the surgery, recovery in a wheelchair and then cruthes, and then waiting out the disease til it's done and Nochy can return to regular activity.

After that whirlwind of doctors, we then went back to Dr R with everyone elses recommendation to see what he would say.

Dr. R basically put down a study in front of us which claimed that kids Nochy's age, with his severity of hip involvement did better with a the non-surgical option of petrie casts and the A brace. The osteotomy comes with long term risks, one major one being that his limbs most likely will be different lengths post this procedure, and although this can be corrected surgically as well, it would basically be bringing up down a bath of surgical interventions he didn't feel was neccesary at this time. Dr R conceded how hard the petrie casts would be for us, and that ultimately Nochy might need the osteotomy after the petrie casts anyway, but that he still thinks this is the best course of action.

We asked him is he would do the osteotomy if thats what we decided we wanted. He asked how he could do a procedure on a child that he didn't feel was neccesary, He offerred to write us referrals to having the procedure down with Dr J is thats what we wanted.

My husband thought the young Dr R sounded nervous, and he did concede that for him and this hospital this would be a first- I appreciated his honesty and integrity in helping us discuss the manner.

And therefore this HUGE decision needs to be made.

Rabbi M has been amazing trying to help us get second opinions. Right now we are waiting to  have his records sent to St. Louis to have our case seen by the guy who actually wrote the study Dr R is quoting.

But in the mean time, I think we're going with Dr R. Medically, it sounds like the best thing to do to go with the less invasive surgery first. Even though it will disrupt our lives in a way that will not be fun-

But its amazing what time can do, because making that decision didn't come with the dark feeling of being pulled down a hole like it felt to me a month ago. Now it feels doable, hard, but doable. We just have to hope that G-d is giving us clarity to make the right decision here and give Dr R the divine intervention needed to bring about the healing our baby so badly needs.

Nochy knows about all of this, we have tried to keep him informed, and he ofcourse opted for Dr K and the option that we threw out first. But after that he asked for Dr R and the petrie casts.

So now I am trying to schedule, and then trying to set up all of the dominoes that will be needed to make this happen, hopefully the sooner the better. I am nauseated to say we would like it to happen within the next two weeks.

What a crazy ride, and my motto of "its a hip not a heart" continues- but I would like to see my little boy running down the soccer field again at some point in his life, with G-ds help it should be soon (an by soon, I mean in 9 months to a year from now.....)