My son will be having his surgery with Dr. Scott in Boston on June 29th. His dad and I are terrified and have no idea what to expect. Any advice, tips or previous experience would be extremely helpful.

Thanks guys!!!

Young folks recovery is faster than us old geezers. I was 36 when I had my first surgery and felt as if I had been run over by a truck for the first day afterwards. I had an incredible headache, to be expected since they were noodling around in my head, but that actually diminished as that first recovery day wore on. In four days I was out of hospital but took a few weeks to get back to where I was prior to surgery, as far as getting tired etc. Make sure he drinks plenty of water.

My daughter had surgery in Boston on March 30th.  Dr. Scott and DR. Smith did a pial syna. on both sides.  We had the surgery planned since January, so everyday was hard thinking about what was going to happen.  So I can tell you a little on what to expect:   He will probably be admitted the day before.  We went to admissions,  signed in,  then got taken to the neuro floor.  The nurses and staff were friendly and all have knowledge on MM.  It's their routine because they see MM patients every day.  Most likely he will be sharing a room with another patient.  They will all come in and ask all the history questions (same story you'll have to give to a few people) so they can get it documented.  They should orient you to the floor and staff and what to expect.  Then he will be given an iv for IV Fluids.  Nothing to eat after midnight.  We met DR. SMITH in the evening and he talked with us for over an hour to discuss surgery, questions or concerns.  The day of surgery was rough.  They came around 7am, took Amanda to Operating area in her bed.  First they got her ready for eeg monitor. She watched tv during this, we met all of the team, surgeons, radiologist, anesthesiologist, nurses, aides, techs.  Everyone was nice, it just went really fast.  My other family members were taken to the waiting room to wait for us.  Then they gave her some "sleepy" medicine but told us to talk to her before she gets it because it works right away.  We told her we love her, they gave the medicine and right away she start falling asleep.  They took her to OR and that was rough!  Then you go to waiting area and sign in, the nurses there inform you about every hour with an update.  Dr. Scott came out after he was done with the first side and explained how it went (just like he said he would) he is very, very nice and tells you everything.  Then he explained what would happen next and DR. Smith came out when it was all done 3 hours later.  He did the same.  We had to wait 15minutes or so, then go up to ICU area.  They want to get the patient cleaned up and situated before you come in to see them.   Now this was the hardest part for me.  When I went into see Amanda laying in ICU with all the monitors and how she looked, it was hard.  We got through it though.  The only thing I would do different is made sure she was getting pain meds.  I assumed she was getting morphine every 4-6hours.  She only had it a couple times the first night and I think her recovery would of went smoother if I had her get it more.  She did pretty well though, it was amazing to see how strong and resilient my 8year old daughter handled what was thrown at her.  She slept most of the first night,  she was in pain.  She wouldn't move her head.  She was afraid when they got her up out of bed the next day.  They give steroids, nausea meds, and antibiotics post surgery.  Neuro checks are around the clock (and they should be).  Foley catheter comes out next day in ICU.  The IVF continue all the way up to discharge.  Amanda was nauseated but did not throw up.  She drank pretty good in the icu and started jello there too.  We went back to the Neuro floor in the same bed evening of next day and stayed there until d/c.  We got admitted on Monday and d/c on Saturday morning.  She had physical therapy for assist with walking and head/neck exercising.  The main thing was keeping her hydrated and tolerate eating ,  she wanted to stay in the room a lot.  Her big issue was really her spirit.  She was very depressed in the hospital, cried a lot and seemed very angry, mainly at me.  It was hard to see her like that, but she fought through it and she is back to herself!  I love her so much and am so proud of how strong she is.  She did get very swollen on the 2nd and third day but never black n blue under eyes.  It was hard seeing her look so different also.  Suggestion:  get involved with the play room and staff there, they can help if your son should get depressed or discourgaged,  I wish I would of done that sooner than the last day.  Take him out to the garden area, it was so pretty.  You will get through this,  right now it seems hard to think of where you will be 2 months from now, but have faith and just be strong for your son and take care of yourself so you can take care of him. 
I will pray for all of you and your family.  You are in very good hands with DR SCOTT!
TAmmy,  Amanda's mom

Hi,

I'm new to the group and my daughter has not had the surgery but I would like to reply to your question about knowing when your son is in pain.  My daughter who just turned 3 also has down syndrome and she can not talk.  She can say a few words but communication is hard with her. As a parent you will know when your child is in pain, it is a gut feeling.  Also looks for signs such a being restless, crying or fussy.  Even things such has not wanting to open eyes or not wanting to eat or drink.  Also I would do what someone else suggested and I thought this was a great tip was you keep track of when the nurse gives your son the pain medication.   

Take care,
Tish

Hi my 12 year old son had a left pial stenosis done in November, the one thing that scared me the most was post op the swelling a few days after surgery , his whole left side was swollen it looked like he got socked in the eye , it is normal just scary to see it get worse but from my understanding is normal and part of the healing process , !!! will be thinking of you on surgery date.

Yes my son has had surgeries before. At 6 months old he had open heart surgery. Recovery was difficult for him and required a 3 1/2 week hospital stay.

I have tried everything different kids of juice. He refuses to drink it. He would rather go thirsty than drink it. I will continue to try...

Good thinking about the water and Gatorade !!!

Hope things go well for you all.

Linda