Just getting started

[Scotwr]

Hi...my 4-month-old is in the early stages of a diagnosis. X-ray reveals a closed suture, ct scheduled for this week. Can you tell me about how long the recovery process is for this type of surgery? How long before he will be up moving around again? I am scared that I may not have enough time off from work and I don't want to leave him with a sitter before he is ready.
We really don't know what to expect next. We aren't sure of the diagnosis yet, but we already have an appt with the neurosurgeon scheduled for July 3. Does that seem like a long time away??

Pam and Scott

[cheryl2]

Hello and welcome. Sorry you have to go thru this. They generally recover amazingly quickly. The recovery time depends on the type of surgery your child is going to need. The two procedures I know about are the CVR (cranio vault recontruction) and another procedure called endoscopic. My daughter had the CVR. She was in the hospital for 5 days, which I believe is about average for that type of surgery. She was pretty much up and around by time she came home. She was very clingy for a few weeks-always wanted to be held, wouldn't sleep unless I was with her. That's pretty common too.

The endoscopic procedure has an even quicker recovery time in general because that procedure is less invasive. Of course you'd have to discuss which procedure is best with your doctors. There's disadvantages and advantages to each and I think it depends a lot on which suture is closed.

A July 3rd appointment should be fine, though I know it does seem like a long time to wait. My daughter had her surgery at 10 1/2 months. I'm sure if your baby needs the surgery, they will get the ball rolling so that it happens as soon as possible.

Do you know if you will be meeting with a plastic surgeon as well as a neuro surgeon? Usually they operate as a team.

Good luck!

[Scotwr]

Yes, our appointment will be with the whole team. They are suppose to be able to tell us then what exactly they will be doing. I am scared to death. I just don't see how this happened. He looks perfectly normal. He doesn't have a weird shaped-head or anything, just one little flat spot. Other than that, he is just as normal as the next baby.

July seems like an eternity away! It is nearly impossible for me to concentrate on anything else. Did you work when your daughter had her surgery? I am also very worried about how long he will need special care after the surgery. I have a very limited amount of time off from work, and I am scared to leave him with anyone else before he is ready.

[Jennifer]

I'll agree with Cheryl.
July 3rd seems like forever away, but it's really not to far. (Though mentally, it's a long time to prepare for a diagnosis). Hopefully after the CT, they will call and at least give you their thoughts- yes it looks like cranio or no it doesn't really... You can always call occassionally to see if they have had any cancellations if you want to see if you can get in earlier.....Did you say somewhere that Luke is suspected to have coronal? If so, I believe the endo procedure is less commenly practiced on them due to the assemtry and stuff....

I would just use your time to research as much as you can, prepare questions (we have some under the surgery section), but most of all, just enjoy him. Try not to let the possible diagnosis rule your life (I'm just putting it out there...it is so hard not to think about it every moment though). Love him, enjoy him

[verdon2]

Pam and Scott-

Yes it's seems like eternity to wait for such a critical result. Try to think positive, its tough but it is out of your hands now. You will be surprised how well the babies do after surgery... they are "Little Troopers!" My Maggie was up and back to her old self w/in days. My husband and I were the ones in "pain"! Good luck in your progress and try to keep us updated.... we are here for you!!!

[Jennifer]

He looks perfectly normal. He doesn't have a weird shaped-head or anything, just one little flat spot. Other than that, he is just as normal as the next baby.

Just me being curious now....Where is the flat spot?

[Scotwr]

the flat spot is in the front left side of his head, he kind of has a very small "bulge" on the opposite side, but no one seems to notice either one unless I point it out to them

[Jennifer]

So they are thinking a coronal suture is fused?


He is soo adorable!!! I love the avator! So cute!

[Scotwr]

The doctor didn't say which one, he just said that he had 2 plates fused together. He is just a pediatrician so he did not want to speculate. Just got the call from him a little while ago...CT scheduled for Friday evening.

[Jennifer]

Good luck on Friday....hopefully they'll give you some info next week! Also, while you are there, you can ask for a copy for yourself. I didn't know it the 1st time, but the 2nd time I asked and they gave me a disc with all Scans in their system under Emily's file. So I got her old one, the one during surgery etc.....interesting stuff.