BabyDrew: Day 25 A Fickle Boy

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

Sunday, October 5, 2008

Day 25 A Fickle Boy

Today has been a pretty good day. I like to keep the nurses on their toes to. It is a good thing my mommy and daddy know me well and know how fickle I am. It seems that the "Sat Probe", checks oxygen saturation levels, only works well on my hands. This morning one of the nurses put it on my foot and it looked like my "sats", oxygen saturation levels, were low. When they moved it back to my hand they looked very good. This makes it difficult because my mommy and daddy have to try to explain things to the nurses and get them to believe them. Hopefully they will listen to my mommy and daddy, because I am doing pretty good. I can not wait to go home to be with all my family. My sisters miss me and mommy and daddy very much. Sometimes they cry and it makes us very sad. They will not let me go home until I am doing well on a feeding routine, doing well on a medicine weaning schedule, and am keep all my numbers good. Hopefully this will be soon.

Please remember to say a prayer for me.

Love, Drew and family

2 comments:

grandma great said...: Dear little greatgrandbaby Andrew,
Thank goodness and especially
thank God that you are doing well
today and hopefully everything will
be good to go when it comes time
to go home again. It has been a
long time to spend almost one third
of your young life in a hospital.
We are praying that God, The Holy
Spirit, and The Lord Jesus will
keep you every bit whole.
Love Forever,
Grandma Great; October 5, 2008 at 8:09 PM
Kelly Braun said...: Hello Baby Drew,
Sorry it has been a few days since I have wrote I have been checking on you but not feeling very good. You sure look good. I sure hope you get to come home soon! Your sisters are sure missing you all. I saw them yesterday playing at Hannah's house. Say hello to your mom and dad and tell them to hang in there and that they sure have been super great through this whole thing! We are all praying for you.
Love,
Tim, Kelly, Tia and Lauryn; October 6, 2008 at 11:23 AM