When Alexia chose her St. Jude Mechanical valve because of it's life expectancy, she didn't tell me that the thing would "click" for every heart beat. I can take her heart rate from across the room and behind closed doors in the peace of the night. I can tell every premature beat, extra beat and too fast heart rate. When we go to the gym, I can hear the thing over the music (ok I am exaggerating)but it wouldn't surprise me. The Doc's said I would get used to it...when?????...please tell me. But the big question is.... when will I stop worrying that it will stop "clicking"??
Thursday, July 26, 2007
The amazing Dr. Mainwaring, PA Dinice and me (in the middle) I love these two people!
I now know Child/Adult CPR. My husband, Carl, who is a PICU RN, purchased a home/mannequin CPR kit and I learned the technique in 30 minutes. It was pretty amazing that I never had learned it since I have a child/adult with a congenital heart defect. I couldn't believe how easy it was! As a celebration of learning a new skill........
........I was doing some research for "giveaway" items at our Parent Evening CHD Symposium and ran across a baseball hat that I personally cannot live without.So, I ordered one for myself (see right picture) and decided to order another as a giveaway on this blog. I will be giving it away on August 11th. How you can receive this amazing hat, you might ask......post in the comment area of this Blog by midnight August 10th, your most creative reason you absolutely cannot live without a hat displaying a CHD logo (I love reading interesting writing) and I will let everyone know who won on Saturday, August 12th morning.
Can't wait to read all of the entries (at least I hope there are a bunch).
Tuesday, July 24, 2007
The picture you see to your right is Aden and Ms. Helen, the world's best swim teacher. Her last day with Aden is Thursday because she is off to NYU. At the beginning of the summer Aden could hardly put his face in the water and is now swimming amazingly well. She has been a godsend and will be missed greatly. Aden will move on to an equally talented instructor, Issac, who is for the more advanced swimmers, I am sure this experience will be equally as good.
So, Alexia got her final Harry Potter book at 12:01AM Saturday and had it finished by 10:00 Saturday morning. I am on a whopping 7th chapter. The Bee contacted her yesterday (heard she had finished the book) and interviewed her about spoilers and plot points, to read this interview go to: http://www.sacbee.com/entertainment/story/287922.html.
I am working on our An Evening with Your Child's Heart Team on the 28th of September. It is a panelled discussion on congenital heart defects with a sit down dinner here in Sacramento. This year we are rolling in a Heart Lung machine and will have a Perfusionist explaining this mysterious piece of equipment. If anyone would like a inviation please email me directly: firstname.lastname@example.org.
Saturday, July 21, 2007
This week was a busy one. We continue to do our every day routine of summer school (Lexi), gymnastics and swimming (Aden) but throw into the mix, my Aunt from Pittsburgh Pa and my in-laws from Phoenix, here to celebrate my mom's birthday! There was a lot of celebrating, eating and just having a great time! Everyone left yesterday and now we will get back to "normal". Everyone was so enchanted by this lovely Sacramento weather, they didn't want to leave.
On Thursday Alexia did a 7 minute speech (Communications class) on CHD and the most common defects. Most of her help came from Dr. Rick Mainwaring and a book called "It's My Heart". She is glad to have that over with. Of course, she left early last night to get her copy of the final Harry Potter book at Midnight and stayed at a friends house, no doubt stayed up all night reading it.
I belong to a Book Club with a amazing group of women ranging from 21years to 70+ years, from college student to Physician. We read Joan Dideon's The Year of Magical Thinking and are now on to Keeping The House by Ellen Baker. This one of my favorite things to do every month ecause I enjoy everyone of these ladies, each one brings something different to group.
Thursday, July 12, 2007
Yesterday, two years ago was Alexia's 5th open heart surgery. She needed a aortic valve replacement and she needed it soon. After meeting with her surgeon he gave her two options, another tissue valve, which would last 7 years or she could go the St. Jude Mechanical Valve, which has a life of 25-30 years, she would have to be on Coumadin, a powerful blood thinner which requires monthly blood draws. This was a small price to pay for not having to have another surgery in 7 years. Ironically, at that time the buzz that was happening was the release of the 6th Harry Potter book. JK Rowling sent Alexia a autographed copy and she read it 24 hours after surgery, she finshed it well before discharge 6 days later. Last night Alexia and I celebrated her 2 year anniversary with her St. Jude valve at opening night of the 5th Harry Potter movie (excellent!) and had mexican food before that. She and I are best friends and have alot of good times together, who knew??
This morning, as I write this, a friend's little girl Marin is having her 2nd open heart surgery in her short life. She is having surgery at Sutter Memorial Hospital by Dr. Mainwaring. If you would like to send her a note of encouragement her Carepage is: babymarin. She is such a cutie pie and sweet natured little girl, her family is awesome!
Saturday, July 7, 2007
I often think about who I was before I had a child with a congenital heart defect, you wouldn't have wanted to know that person. Twenty two plus-years-ago I was a self absorbed, self destructive person who didn't give a rip about anyone besides herself. After I had Alexia, I made a complete turn around, I still had some selfish moments but they didn't last long. I started volunteering for the Make A Wish Foundation of Sacramento, www.makeawish-sacto.org, and eventually became Program Director. During one of Alexia's scariest hospitalizations, about 10 years ago, I met my now husband Carl who was the Charge Nurse in the PICU where Alexia spent 6 + weeks, which resulted in our wonderful, 6-year-old son, Aden. I am fortunate to be able to stay home with my family and volunteer for what I enjoy most,The Pediatric Heart Surgery Program at Sutter Memorial Hospital. I am also the Chairperson for the Family Advisory Council and offer alot of help at Aden's school Camellia Waldorf, Class Parent. I am now working on our upcoming Pediatric Heart Surgery Parent Evening Symposium, geared for September 28th. This is an educational event, with dinner, dessert etc. This year we will talk about many things including what can be done via heart catheterization in lieu of open heart surgery. We will have an entire team of physicians, nurses and child life specialists and the role they play in your child's care before during and after open heart surgery. I thrive on these types of things, of helping others...what a difference from pre-twenty plus-years-ago.
Friday, July 6, 2007
This blog is being developed to keep you updated on our family. I will update you on Carl's art, Lexi's journey in the Pre-Law and CHD world, Aden's swimming, gymnastics and his amazing school and any volunteer work I am doing for the Pediatric Heart Surgery Program at Sutter Memorial Hospital. Please bear with me as I continue to learn how to use Blogger.