Today has been good so far. I was off for 7 1/2 hours doing pretty well and then they changed the oxygenator again. Then they put me back on for an hour and now I am off again. The doctors want to see how I do through the night before making any decisions. When I say "off", what I mean is that there is no oxygen going through the blood, my lungs are having to provide the oxygen. My mommy and daddy are very proud of how well I have done today and hope that tonight I will do just as good. They are praying very hard along with many others. I know the Lord is giving me strength and hopefully tonight will go smooth and tomorrow I can say goodbye to my friend Ecmo.
Please remember to say a prayer for me.
Love, Drew and Family
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
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
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5 comments:
Hi Drew,
It sounds like you're getting stronger by the minute and with the Lord watching over you as well as your friends and family, we know it won't be long before the big day comes and Ecmo is no longer needed. Our prayers are with you and your family as you fight like a tiger. Our God is awesome and we know you will prevail!!
Love Your Montana Friends,
Brandon, Angela, Aryana, & Jackson
P.S. Go Niners!
Hello.... Max sent us to leave you a prayer and to let you know that there are people praying daily for you!
Take care! God Bless!!
Go Drew! You're getting stronger every day, and soon you will say goodbye to Ecmo. Trust in the Lord, and he will take care of you. Our prayers are with you and your family.
Love,
Burley, Shannon, Colter, Luke & Aubree
My dearest great grand baby,
I totally agree with the Blacks.
It sounds like to me that you
really are getting stronger and
that is great news. Hopefully all
has gone well with you today. It
is good to have a machine like
your friend Ecmo but better yet
when it is no longer needed.
Needless to say we are all praying
and Melody is still praying also.
Love Forever,
Grandma Great
Go Drew Go! You're such a fighter! Your friend Teagan sends her best 'heart buddy' wishes from over here on G-4! Praying for you!
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