I apologize for not updating sooner. Life has been a little busy. Ryan came home from the hospital 11/25 and continues to do extremely well. He even returned to school this past Monday, one day shy of 3 weeks! His friends at school painted a 12 ft, welcome back banner and the girls in his class made a heart shaped pillow for him in which his classmates signed.
We saw his cardiologist for a postoperative visit today. He has now been relieved of ALL medication including his blood pressure medication. Now we're just on a Flintstone vitamin daily. His doctor told us that this is the first in her career that she has seen a valve repaired to normal function without a mild or moderate leak. Ryan will continue to be monitored every 6 months for the next year, just to keep an eye on the repair and the small narrowing of the valve that was done to achieve such wonderful results.
There are just not enough words to express the gratitude and relief that we feel. This has been quite an experience.
Prayers to everyone awaiting surgery and those in recovery.
Ryan - BAV repair 11/20/2012
Jen (Proud Mom of Ryan)
Ryan is doing fantastic!! He decided on Tuesday evening (5 hrs post op) that the ventilator needed to come out. He almost gave the nurses a hand with the job (yikes). Initially he had some issues with blood sugar which has been attributed to a medication, so that's all back to normal. Small BP issues, and doctors are working to get that under control. Ryan is a little anemic so that is being watched carefully.
He's been out of bed a few times sitting in a chair, he ate some soup and half a roast beef sandwich and is starting to reposition himself in the bed. Ryan spent another night in ICU last night and we are hopeful he'll be relieved of his chest tubes today and be moved to a regular room.
Ryan is HOT...his temperature is normal but he says he's hot, his hands and feet are warm for the first time in as long as I can remember, and he says his heart is pounding (monitors say otherwise)...all the things Ryan is experiencing for the first time with his improved circulation and properly working valve. I'm sure there will be many more firsts for him in the weeks to come.
Ryan - BAV Repair 11/20/2012
Jen (Proud Mom of Ryan)
It seems just a short time ago we were told Ryan's surgery would need to happen soon and now here we are 3 months later and surgery is tomorrow! Time sure does fly when you're not looking.
Ryan had his pre-op appointment today and everything checked out, he was cleared for surgery. The anesthesiologist came and spoke at length to him and explained everything, this really eased Ryan's fears of the breathing tube :) They gave Ryan a little something to help him relax and sleep tonight (I hope it works).
Over the weekend, Ryan enjoyed lots of FOOD and friends. He went for tacos with his Aunt Robyn, Pop-Pop made him an early Thanksgiving dinner, meatballs and bonfire with the neighbors, and finally went with our friend Michael to play a strategic tank game. He's been busy.
I honestly cannot put into words how amazing this kid has been. He has taken each day in stride. Not letting anything or anyone get him down.
This will be our last update until after surgery. Happy Thanksgiving!
Ryan has been doing great. Although today he has a migraine with aura (sp?), so as you would expect he's a little grumpy. Each week he talks a little more about his surgery and relays a little anxiety or nervousness about it. We try to dispell his fear, but frankly we're a little scared too. I would imagine that this is very common and will get a little more intense before his day arrives.
As I'm preparing for everything we'll need, I've read that the majority of you recommend a pillow after surgery. Do hospital's generally supply those or if not, what type do you recommend?
It seems we're going to have an unwelcomed hurricane visit us in about 48 hours. We're all prepared with plenty of food, water, batteries and flashlights.
As of today, we are 4 short weeks away from Ryan's surgery date. Ryan took it upon himself to read The Patients Guide and although I didn't want him to read somethings (thought it would scare him) he seems to be better for knowing. Ryan's only concern is the ventilator tube. Hopefully our imagination is worse than reality. Ryan's bravery at the age of 15 is amazing to me!!
We have had some trouble recently with a Gym Teacher at school insisting that Ryan perform the "physical tests" despite his restriction form from the doctor. Thankfully that situation has been rectified.
Everyone take care and many wishes for a speedy recovery.
Ryan's Dad and I met with the surgeon this past Thursday. Ryan unfortunately couldn't join us due to logistics. We really liked the surgeon and feel that he is more than skilled to take our little boys heart into his hands. Dr. Pizzaro answered all of questions and provided us with more than enough statistics on all of the choices for replacement of Ryan's valve.
I'm positive that Ryan's cardiologist has been telling us all along and I've just not grasped what they were saying, but Dr. Pizzaro was very clear that Ryan's heart is already enlarging. Dr. Pizzaro also provided some insight on Ryan's growth (currently 5'1" and 85lbs) that with the surgery his circulation through his body will be improved that he will really start to grow!! From his mouth to God's ears, please let this boy grow.
We are 98% positive that the Ross Procedure will be the best solution for Ryan.
We also set a date for surgery. November 20th 2012 will be Ryan's day, after which he will be a member of the zipper club and an ex-regurgiator :)