Re: Jolene and talked to son's ortho surgeon

[Guest guest]

Oh my goodness ! I wish I had longer to write here but I just

wanted to tell you that you should get the " Mother of the Year "

award. My problems are so tiny when I think of what your son and your

family go through each day and you sounded so calm in your post. I

will love adding you and your family to my ever growing prayer list.

Please know that I respect and admire you so much. You are one

awesome mom! God Bless You, Dereise.........

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.

>

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