BabyDrew: New Journey: Bumps in the Road

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

Thursday, April 30, 2009

New Journey: Bumps in the Road

Hello,

I have had a rough day today. I have been running a 104 fever. My x-rays this morning showed that I am retaining a lot of fluid and my charts also show I am fluid positive. They also showed I have a lot of mucus build up in my lungs and that I have a partially collapsed left lung. Do to this they have put me back on the c-pap machine and are hoping this does the trick and they don't have to put the breathing tube back. My mommy and daddy are very worried for me and are praying the Lord continues to give me strength.

Right now we are in a holding pattern to see if the c-pap will help re inflate my lung and if this makes my fever go away. They are also running cultures to see if I have an infection that needs to be treated. I will keep everyone posted on how things are looking.

Please remember to say a prayer for me.

Love, Drew and Family

2 comments:

yellowrose1982 said...: we are thinking about you and wishing you well.; April 30, 2009 at 7:26 PM
grandma great said...: Hello Little Sweetheart
I am sorry that you are having
a rough time of it today. I had
hoped that all was going well.

May our Lord and Savior Jesus
Christ heal that precious little
body and make you every bit well
and whole. We are petitioning
God to heal you in the name of His
precious Son, Jesus. By Jesus's
stripes you were healed.

Love, forever, Grandma Great; May 1, 2009 at 1:50 PM