Hello All,

As my daughter is about to have her pial synangiosis next week, I was curious as to what we can expect for her 1, 3, 5, 10 days after the surgery.  I understand that everyone is different, but it would be nice to hear what the range of experiences are.  From what I understand most people seem to have a 5 day hospital stay after the surgery.  The surgery is July, 24th, and we are not flying out again until Aug 6th.  So I think I have left plenty of time for her hospital stay and then some.  They said if we can stay in town for a few days after being released that is a good thing.

So, we have looked up all of the free things to do in BOS so that if Abby wants to leave the hotel we can do that.  The whole trip is totally controlled by what she wants and has the ability to do.  Having said that, is it possible that she will feel well enough 7-8 days after surgery to go out for dinner at a nearby restaurant or will she be too tired so that we will be eating in the hotel?  I just wanted to be prepared to keep her from getting bored if she felt well enough to go out.  She is 10 and after 6 or so days in the hospital she is usually really ready to get out.

So, back to my basic info request.  Any experiences you can share about your first say 10 days post surgery would be great!

Thank you again to this community, it has been a great comfort to know there are others that have been through this and are still running strong.

Thanks,

Demian

(Abby's Dad)

Hi.  My daughter who is 10 had this operation with Dr. Scott in January of 2008.  She too was talking and laughing just a few hours out of recovery.  She was very tired for the first two days but was up and walking by the 4th day when we were discharged.  There was alot of swelling in her face on the side of the surgery that came on the 2nd day after surgery.  She didn't like how it looked, but it wasn't painful.  After we got home she was quite tired.  She liked having visitors but the limit was about an hour of activity and then she needed to rest quietly.  Her pain (headache and incision pain) was well managed with just tylenol.  By the 2nd week home she was able to return to school for a few hours each day.  It took a few months for her to return to her normal level of activity and to be free of the pain in her head.  The staff at Childrens know very well how to care for Moyamoya kids and their parents!  You will be in very good hands.  I live locally so please let me know if you have any more questions!

soccermom wrote on Jul 17^th, 2009 at 5:44pm:


Hey Demian

Ditto what soccermom posted. Luca came out of surgery and had the ICU staff amazed at how 'perky' she was. The swelling can be a bit frightening, but it will subside. We spent 7 full days in hospital during which time she obviously got a lot of rest, and after we were back in our rental apartment we definately explored Newcastle before travelling back to South Africa.

You're spot on by saying she will guide you; if she's tired, don't push her.

Best of luck on 24th, I'll be thinking of you guys. It's a really tough day for you all, but I'm sure your little girl will come through with flying colors.

Mark (Luca Dad)

Hi Demian,

I'll be praying for Abby. Everything will be fine. You are in the best hands. Please maintain us updated.

All the best,

Paula

Demian,  remember to take care of yourself as well!!  Don't get run down.  Try to sleep.  The day of the surgery will be long.  Just the waiting!!!!  Pack a bag for yourself, I know I didn't want to leave the waiting room!!!  My daughter was a little cranky after surgery but had IV pain meds and blood pressure meds in ICU the first night.  She did well.  They stopped those and they put her in a regular room.  SHe took Tylenol for pain after that. They had PT come and make sure she could walk well enough to get around.  We stayed in a CA motel.  We did take her to see a movie between surgeries - she had them a week apart.  Walking too far made her head hurt and also going from the hot air to the air conditioning bothered her.  She took Tylenol and was fine after that.  If you have any specific questions feel free to ask.    I pray that all goes well for your daughter and your family!!!!

-Audrey