Thursday, June 25, 2015

A "Good News, Bad News" Kind of Day

Heading back.

The orthopedic surgeon came in and told us that the ER doctor and nurse practitioner were wrong.  Her hip IS out of its socket and all her bone is there but her round part of the hip is not smooth like a normal hip.  He said that there is nothing that his department can do at this point.  This is a problem that started years ago and could have been a non issue today. Neurology should have been on top of her spacisity which he says is the cause.  I told him that is all the years we have been going to neurology (twice a year for 13 years), NO ONE has never said the word spacisity. He immediately gets concerned.  We ask a few more questions.  Basically, it needs to be treated with 2 Alieve twice a day and therapy.  He leaves the room and a nurse walks in and says she is with neurology.  Her name is Bonnie.  Bonnie says that Dr. Mooney (Orthopedic surgeon) is really upset with neurology and wants her seen today.  Apparently someone has dropped the ball.

We meet the neurologist, Dr. Kingsman (came from John Hopkins University) and he is visibly upset. There must have been a quarrel in the hallway.  Pointing fingers.  I guess neurology and orthopedics  are supposed to go hand in hand.  He examines her and says that she needs to have her pain managed before any therapy.  No one can even touch her at this point.  He prescribed Valium for at night along with other medicines.  He wanted to admit her to get her pain under control, but with Obama coming into town tomorrow, it might be crazy.  I said we would try to manage her pain from home for now but if we couldn't, we would come down and be admitted.

Having seizures isn't helping either.  We have to get her on stronger meds that will give her ZERO seizures.

Lizzy has cerebral palsy and that, unfortunately, comes with spine and hip problems that she will have to deal with.  I would give anything to have my "normal" Lizzy back.  I miss her.

I was relieved but anxious thinking surgery was an option.  It was a fix to the problem.  We are driving back with her hip still out of joint, she is still in pain, and I am not sure how I feel.  We saw to physicians that are at the top of their field and I am blessed and thankful for that.

I am so thankful for your support.  Having encouraging notes, texts, emails, phone calls, and messages have helped us.  We have been put on many prayer chains and I know how many of you have been praying.  We are thankful for modern medicine.  We are thankful for a neurologist that spent almost an hour with us today without having an appointment.  We are thankful today that we still have our Lizzy.  She will laugh and smile again. That is my prayer.

1 comment:

korrene said...

I am so sorry that Lizzy is having to go through all that pain. I am happy that you now have some clear answers for what is happening and a clear path of treatment she can be on. I will pray for her and your family. Love ya!


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