Jolene and talked to son's ortho surgeon

[Guest guest]

Hi Jolene...thank you for your response. The problem is that due to

the severity of Tommy's cerebral palsy the initial surgery itself

was a risk. They were unable to do both posterior and

anterior...just the anterior rods with fusion of the worst part of

the curve. Tommy would be unable to do the things that are needed

to avoid complications afterwards...he cannot cough on command,

cannot sit up on his own or walk. More and more now it seems that

with any mention of any type of surgery it's getting down to how

risky is it and are the surgeons willing to take that high of a

risk. In the beginning when he was little it was like " it's risky "

but the surgery was done. Now it's a feeling of it's risky and too

risky to do any extensive surgeries on him.

My friends son is about the same age as Tommy and I always thought

of him as sorta like Tommy...never really thought of them

as " severe " in terms of their CP. He just recently had spinal

surgery and had major complications to the point he ended up back in

the hospital and still is dealing with it several months later.

Did speak with Tommys surgeon on Friday and she said that it does appear that he

has crankshaft....that the hump on the back right side is the rib cage being

pushed back and the hump on the front is the rib cage being pushed forward. She

checked his hip/pelvic xrays that were done recently and said it appears that

the risor? area is almost complete/closed? I need to read up on that I

guess...but basically it looks like he has minimal growth left so that's good.

I did read where there are two peak growth perios and the second one was

something like 11-15 so that would coincide with all this...and he will be 16 in

February.

She said that there is a procedure where they remove a rib or two from the side

where the lung is compressed but that has it's own complications or issues. She

agreed that he needs to be seen by the pulmonologist and that it would be good

to have his primary peds doc check him now while we are doing the process of

getting the referral for the pulmonologist...have him look him over, check

lungs, heart and put a pulse ox on him and see how he's doing. She said that if

we get the appt. set up on a Wed. or Fri. that we can then coordinate it for her

to also see him...that way don't have to make two trips down to Ann Arbor.

The only thing she said that sorta concerns me I guess is that she said from

what I am describing...the increased thickish secretions, his trouble moving it,

that he may already be starting to experience pulmonary issues.

For now figure I will just have to take it one step at a time and try not to

drive myself any buggier...cause reality is I won't get the answers until we've

seen the pulmonologist and then the surgeon as to what is happening, where we

stand and what if anything can be done.

Need to get busy here...thanks again for your response.