Today went from good to bad rather quickly. The Doctors decided they wanted to rest my lungs for a couple more days, but would need to change out the oxidizer on the Echmo machine before turning me back on it. When they went to start the machine back into me my heart rate started dropping. It was into the 40's when the doctor started doing chest compressions to keep my heart beating. My mommy and daddy were so very scared. I have very good doctors though and they were able to get me through and stable again. They are not sure when they will try to take me off Echmo again. All of your prayers are helping and I know the Lord is with me. I hope my mommy and daddy can feel him as much as I can. They are very scared after what happened today. Hopefully things will remain stable so they can take me off of Echmo soon.
Please remember to say a prayer for me.
Love, Drew and Family
Watch me Grow
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
Subscribe to:
Post Comments (Atom)
7 comments:
Keep fighting the good fight Drew, your mommy and daddy are there, and God is holding you all in his hands right now. Be brave.
Baby Drew keep on fighting and resting. May God's healing hand be laid upon your heart little guy. God loves children so much.
Hang in there, sweet baby Drew. God is there even in the midst of the scary moments. I'm continuing to lift you before our Father in heaven.
Rebecca
Dearest little Baby Andrew
Keep on keeping on precious
little man. God loves you and
so do we. You are a very important
part of all our lives. We need
you here with us.
Love Forever,
Grandma Great
Dear Jacksons --
We love you, too. How could we not? Our families share one of the most difficult, and by faith we believe most meaningful, experiences in life -- loving a sick child.
I've been young and now am getting older, and I've never seen faithful Christians (what we by grace are even, maybe especially, when we're not). But I've often wondered what He was doing.
When there's time I hope you'll read Rugby Chapel by Matthew Arnold. Lines 58 thru 208 wonderfully, hopefully describe life with its storms and us with our struggles. Look especially at lines 188ff and think of it when other Christians ("like angels") appear. And know that there have been times when you so appeared to Sam and Shannon.
We will pray for you every day. A part of the prayer will be my mother's favorite line from the hymn, Whispering Hope -- that the deepening darkness will brighten the glimmering star (of hope).
Did I tell you we love you?
Charlie Middlebrook
I found your blog through Teagan's. Our daughter is also a cardiac patient at Children's, she has HRHS. I've been checking on you since Susie told me she met you guys and posted your blog on her site. Know that you're in our prayers and thoughts. Drew is so precious and he will come of off ECMO very soon, keep up your strong faith. Take care of yourselves and know that many people are praying for your sweet baby.
Love,
Katie (mom to Maddie)
allredbabygirl.blogspot.com
The line should have said "I've never seen faithful Christians forsaken.
CM
Post a Comment