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
Day 33 Making Progress
Today has been another good day for me. The doctors have done a couple of different things today. First they changed my lasix from IV to oral. This is the medicine that helps me to diuris fluid, or pee off excess fluid. Changing to oral is a large step, because it is an important step on the path toward home. They will keep a close eye on my saturation's and my fluid levels to make sure my body is handling this change well. The next big change was going from continuous feeds to bolus feeds. This means that I will be fed every four hours instead of non-stop. If these go well that means I might get to go home soon. My mommy and daddy are so proud of me. They are very excited, but know that there are still some hurdles to jump through. The doctors are still weaning down my oxygen to see if I will need it when I go home, and if so how much. So far I have done well. Everyone is excited about how well my scars are healing. Now I just need a good story to tell all my friends, maybe a shark attack. Hopefully things will continue to go well so we can go home to Kalispell.
Please remember to say a prayer for me.
Love, Drew and Family
1 comment:
Dear Great Grandbaby Andrew,
No need for a story about the
shark, that is a battle scar of
courage that can proudly be worn.
You most certainly have come a long
way baby. We are very proud of you
also and are praying that you will
soon be home with your sisters and
parents.
Love Forever,
Grandma Great
Post a Comment