And the Waiting Game Continues

I know it's been awhile, but Braydon man has kept us very busy.  I thought I would post the questions that we asked Dr. Puccioni and follow up on how our appointment with Dr. Miller went.

Q&A with Dr. Puccioni

1.  Do you believe Braydon has Craniosynostosis and if so, is it just his Sagittal Suture that has fused together?
Yes and based on the X-Rays it is just the one suture.

2.  Would you consider it mild, moderate or severe?
Severe, due to the amount of pressure being place on his head.

3.  Do you recommend surgery to correct the synostosis?
Yes

4.  Which surgery method do you prefer?
Posterior Cranio Vault Remodel

5.  Which surgery method will you be using on Braydon?
It's your choice but I recommend the PCVR.

6.  Can you describe how the surgery will work?
We will make an incision that runs from ear to ear.  The skull will be removed and broken in to two pieces.  This will break the fusion.  Dr. Miller will then reshape the skull and put it back together to allow for maximum growth.

7.  When do you recommend doing the surgery on Braydon?
5-6 months old - but willing to do it this year

8.  What are the risks/complications with the surgery?
Bleeding out and wound infection

9.  What are the risks if we opt out of the surgery?
Cognitive Development, Brain Damage

10.  Are there any other forms of treatment besides surgery?
No

11.  How many cranio surgeries have you performed?
100s

12.  How many sagittal cases?
100s

13.  What are the chances of multiple surgeries?
10%

14.  Will Braydon have to wear a helmet after surgery?
No

15.  Do you believe Braydon's case is some way related to Genetics?
Not Hereditary

16.  Do you use Procrit injections to reduce the risk of need for a blood transfusion?
I use to use it all the time until the FDA black boxed it.  So I don't use it anymore.  Give Braydon plenty of iron supplements prior to the surgery and keep plumping him up.  That should reduce the risk.

17.  Do you believe Braydon will need a blood transfusion during surgery?
50% chance

18.  Can we donate prior to his surgery?
Yes, but don't recommend due to possible complications.

19.  Will you have to shave his head?
It's up to the plastic surgeon. (Plastic surgeon said yes)

20.  What type of stitching will you use?  Also will plates or screws need to be placed in his head?  What kind will you use?
Dis solvable stitches will be used along with absorb able plates and screws.

21.  Will Braydon's head be bandaged up post-up?
Yes, for a couple of days.  Also a drainage tube will be put on his head for a couple of days.

22.  How long after post-op will be he incoherent?
1 hour or 2

23.  Will I still be able to breast-feed Braydon before and after surgery?
Yes, but he probably won't eat a lot after surgery.  Recommended pumping and using bottles for a couple of days.

24.  What's the recovery time after the surgery?
3-5 days in the hospital and 6-9 months at home

25.  How much time should I take off work?
3-4 weeks

26.  Where do we go from here?
Go downstairs and get a CT scan, set up an appointment with Dr. Miller, wait for insurance approval, and then schedule surgery.

So this is where we sit.  We had an appointment with Dr. Miller on Monday, the 8th.  He pretty much told us the same thing that Dr. Puccioni said about the surgery.  However he wasn't very optimistic about getting the surgery done before the end of the year.  He thought insurance approval would take about a month and they won't schedule the surgery until they get prior approval.

So I've been calling the insurance company every day seeing if they've received documentation asking for pre-approval.  And Terry finally called Dr. Miller's office on Thursday.  They were waiting for one more CPT code to submit and then would fax it in.  I think I will call again on Monday.

It breaks my heart that I believe Braydon is getting headaches from the pressure on his head.  While he can't physically tell us that his head hurts, his demeanor hints that's the case.  He will still be really fussy after being fed and changed.  He will finally calm down about a half hour Tylenol is administered.

However the pressure on his brain has yet to stunt his developmental growth.  He babbles all the time and will laugh and smile at us.  He can hold his head up when we're holding him or "sitting" him on the table.  He can also sit up on the couch by himself as long as he has some sort of support.  We still haven't rolled over, but we are definitely starting to try.  Plus he wants to stand all the time.

We can't wait for this part of the journey to be over.  The stress of having a "sick" child has definitely taken the toll on us.  We appreciate all the support and prayers our family and friends have given us.  It has helped immensely.  Please keep on praying that the insurance approval comes through quickly and that we can get the surgery done prior to the end of the year.  Even if it means spending Christmas in the hospital.     

Braydon says keep on smiling.