My Story
Hello, my name is Andrew Wade Jackson. My friends call me Drew. When my mommy was 17 weeks pregnant they found out that I have a severe heart defect called an unbalanced atrioventricular septal defect. This means I have holes in the septal wall of my heart and that only 1 of my 2 ventricles is working properly. This heart defect was caused by trisomy 21 often known as Downs Syndrome.
I was born in Kalispell on July 10th and 3 hours after birth took my first plane ride to Seattle. I was there for 10 days as they monitored my heart. Then I went home to Kalispell to be with my family.
On September 10th I was set to have a pulmonary band surgery which is normally a low risk surgery. However, they were not able to do this surgery and had to begin the "Norwood" series of surgeries. My first surgery was Sept. 11th. Early in the morning I went into surgery spending 4 hours on the heart and lung by-pass machine. When it was time to come off they could not get my heart and lungs started again. I went on a life support machine called ECMO which takes the blood from the body, gives it oxygen and sends it back. This machine would be my best friend for the next 12 days and ultimately saved my life. After many days on life support, many more in the CICU, and a while on the floor I was able to return home. At home I was on oxygen full time, had a feeding tube, and many medications. On April 28th, 2009 I had my second open heart surgery, the Glenn. This surgery was not near as eventful as the first and we were able to return home after only 15 days away. At home things have gone well. I am now without oxygen and without my feeding tube. Currently my Cardiologist is watching me closly as we wait for my next open heart surgery, the Fontan. This will take place between the ages of three and five. My mommy and daddy are nervous as this surgery is more major than the last. Given the complexity of my heart, my past history of issues, and my trisomy 21 make my surgerys more difficult. However, my mommy and daddy trust in the Lord and the Power of Prayer.
August of 2011 we decided to move to Seattle to be closer to Childrens and are adjusting to life in the big city. On Tuesday July 31st I will have my next major open heart surgery. Please remember to say a prayer for me.
Thank you for visiting my site.
Here are a few statistics about my life from July 10, 2008 to July 24,2012:
Days lived at Childrens: 55
Days in ICU: 33
Days on Life Support: 17
2 Open Heart Surgery(Complete with Heart and Lung By-Pass machine)
1 Heart Surgery
3 Heart Cauterization
1 Life Flight(Kalispell to Seattle)
1 Ambulance Ride(Kalispell Hospital to Airport)
3 Trips to Seattle
1 Cardiac Arrest(Complete with CPR and Epinephrine-This saved my life)
To many Echocardiograms to count
To many trips to Cardiologist to count
To many blood transfusions to count
Please say a prayer for me.
Love, Baby Drew and Family
Busy Day
Wow, today was very busy for me. First my physical therapists came and they worked with me and are setting up an exercise plan. They will be working with me twice a week. Then I went to have my first RSV shot which I did not like very much. After this it was off to the cardiologist, which did go well. I then finished my day at my pediatrician who gave me three immunization shots. So needless to say I was poked and prodded all day long.
As you can see I am looking very good, at least this is what all my friends and doctors tell me. But, as my cardiologist reminded my mommy and daddy is that even though I look good on the outside my inside is still very fragile. It will be a long winter as we are couped up in the house hiding from germs and bacteria. One day I will be much stronger and my mommy and daddy will be so happy to be able to take me out to see all my friends.
Please remember to say a prayer for me.
Love, Drew and Family
3 comments:
He is soooooo cute!! I can't believe how old he looks. I know, the shots never get old- it is MEAN every time.
You are looking great baby Drew! Sorry about the shots baby. I saw your friend Max at church yesterday, he is doing very well and seems full of energy. We will pray for your friend with the new heart.
Hugs, Terri and Charles
What a fine looking boy you are
and how far you have come since
last July! Our thoughts are
with your friend Mia and all the
wonderful people that you have
met in your journey, just some
very ordinary people called upon
to do the impossible and they
managed to do this with grace
and dignity. God Bless you little
man and your special friends.
We are praying that the rest of
Mias life will be filled with health and wholeness and we want\
the same for yourself and Teagan
and Max.
Love forever
Grandma Great
Post a Comment