Tonight

Tonight was our very first meeting and we had three to start with and we spent the time getting to know each other and we had delicious brownies made by Jami who is a co-starter of our group.The next meeting will be April 24th at 7:00 at ther same place.We are hoping to get more people involved with the group and we thank those who made the trip to the first meeting (Jami and Kelley.)

Tonight was very fun and we hope to have many more nights like this one in the future.

Tomorrow

Is our first official support group meeting at Sutter Memorial Hospital at 7:00 pm.I really hope that this gets off to a great start because I feel that there is definitely a need for it.If you have any questions,feel free to call me at (916) 541-2141.

Hope to see you there!

Reminder

I wanted to remind everyone that the first teen/young adult support group meeting will be on March 27 at 7:00 pm and it's at Sutter Memorial hospital.If anyone can bring a treat to share,please let me know.

Please let me know either by a email or a call or even posting a comment on the blog if you plan on attending the first meeting.

Poll

I wanted to let everyone know that I posted a poll just to see how people came across this blog.I find it interesting how people find the same thing so many different ways.

Collecting Stories

I am collecting stories of teenagers and young adults to help others who are just starting on this road.Do you have a story you would like to share?

First Support Group Meeting

The first support group meeting will be on March 27th at 7:00pm at Sutter Memorial Hospital in Sacramento California.If you are planning to come please leave a comment here or email me at alexiaboesen@hotmail.com. We hope to have several members at our first meeting.If anyone is coming and could bring a treat to share,please let me know.

Thanks!

My story from my mother's perspective

Where do I start..... 22-years.........Alexia was born December 1985 (yikes!!) with a heart defect that was almost unheard of at that time. She had a Double outlet right ventricle with multiple VSD's. At a couple days old she had a PA Band done, at 6 months she had BT Shunt and then at 4-years she had her "repair".During the first year of her life, I left her father and moved back to Sacramento with my mom (born and raised). All three of her heart surgeries were tough on her and me. Her hospitalizations were always long and the recovery was always difficult. She did have some great surgeons but they were really in the beginning stages of Pediatric Cardiac Surgery and everything was experimental. When Alexia was young, they just didn’t know much about heart defects in general.When she was 11-years, we found out her Aortic Valve was leaking. I knew it wasn’t going to last forever, but I was still hopeful that we could put it off a bit longer. I really wanted to wait as her surgery at 4 years of age was scary beyond belief. Her doctors kept close watch on her, but all of a sudden, out of no where, she was hospitalized and surgery needed to be done....NOW. Her recovery was long, it lasted about 6 weeks. They had a hard time getting her extubated but she ended up thriving afterward. She was a whole new child, everything seemed good. Then, out of no where, puberty hit (literally right after her heart started working the way it should have!). In the meantime, I had met Carl, a Charge nurse at Sutter Memorial, PICU (where she had her surgery at 11-years), he was very active in her care. We were married 2-years later and now have 5-year-old Aden. Alexia had her annual echo in June of 2005. Her doctor found out her aortic valve was leaking......again! We were wasting no time this time around. Her heart cath was scheduled for one week later. It turned out that Alexia not only had the leaky valve, she also had a "false" annurysm on her heart. All I could think was that this was just lovely! *sigh*After that, the next step was to meet with the doctor and discuss our options. Thankfully, Carl knew of a great surgeon. Carl had worked closely with him, recovering his patients, he had the utmost faith in him and only wanted him to do it. We were given the option of Stanford, but we knew who we wanted. I was scared beyond belief; remember all Alexia's surgeries were very hard. And here I was, sitting there, getting ready to do it all over again. I had to once again watch my daughter be taken into surgery.July 11th, 2005 arrived, it was time for surgery. It was a lengthy surgery due to the scar tissue from her previous surgeries but she swam through it! I was so proud of her. She was extubated early the next morning. Shortly after, she was sitting up drinking water and getting her hair brushed! She was home 7 days later. This was a record setter. She had no set backs and has so much energy it is amazing. She is currently only on one med, Coumadin. This was something that I never dreamed would happen. She has never been on only one medication. For Alexia whole life she has taken 3 or more medications and now she is down to 1. She has a St. Jude Mechanical Valve which is supposed last 30/35 years!!!!! She is taking 20 units at Sacramento State. Alexia's surgeon is the most amazing surgeon I have ever met; he is skilled, highly intelligent and loves his patients. Obviously skill plays a huge factor, but knowing just how much he cares makes him the wonderful surgeon that he is. He sat in Alexia's room surgery day until well after 2:00AM, just to make sure she stayed stable. He was there everyday until she got discharged.