Raise your hands if you want the notes from today.

Sorry, You didn't raise your hand, You thought I would just give it to you anyways. Sorry too late.

Oh, you're raising your hand now? And you think I will be forgiving and compassionate? Or maybe just practical.....

Well, it was a long day with only 1 Dr appointment. We met with Dr Moir of general surgery. He said he only had 2 things he wanted us to take home from the discussion- but I took notes and made lots of other connections he didn't guess I understood.

Anyways, Dr. Moir's job is to get to the area where Dr Raffle does the work. So they basically plan to give Ian a C section (says he will do this with out cutting any muscles), and push everything out of the way to Dr Raffle can get to the lower spinal cord and fluid sack. There is also a potential secondary incision going in the crease to the back side of the rectum.

Ian's official diagnosis is "neurogenic bowel", and what most of the long term care issues will be with the functioning of the bowels. For most of these issues we will be dealing with Dr Freese of GI. Removing the fluid sack, detethering the spinal cord, tightening the rectal muscles will all help with this process of gaining continence with his bowels. (the GIs will work with us on laxatives, bowel training and whatever else is needed)

Meanwhile, before they open Ian's belly they want to have a list of everything that should be done at the time, so we are off to see more Drs. This time we are seeing Dr Hughsman of Urology. On April 3rd he will have urinary x-ray, renal ultrasound and a urodynamic study. Then on the 4th, we will be meeting with Dr Hughsman and then hopefully Dr Raffle and get a very clear understanding of how everything is functioning and what things should be done, and probably schedule surgery at that time.

Dr Moir says that most kids are mostly healed from this kind of surgery in 1 week, and that the vast majority of that week will be in the hospital.


Meanwhile, I have made sure to get contacts on every Doctor I am working with and am writing down lots of questions to ask. And I have secretaries in 3 divisions at the Mayo that have promised to help us anyway they can. I think Ian must charm them, of course the other option is that they feel sorry for us when we march all 4 beautiful boys around their waiting rooms and offices until things get done:)

While talking on the phone with another Doctor, Moir explained that they had a 4 year old boy with an "impressive case of internal myelomeningocele."

What is really increadable to me though, is how well he has and is doing with what his spinal cord looks like.