BabyDrew: Day 34 Another Day Closer

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

Tuesday, October 14, 2008

Day 34 Another Day Closer

My X-Rays showed unchanged this morning...Hooray....This means that so far I am doing ok on the Oral lasixs. Hopefully this keeps going over the next several days. Today has been a stable day and it looks like they are done weaning my oxygen and will have to have it when I go home. We have come to a level that my parents and the doctors are not comfortable decreasing. So it sounds that they will keep the oxygen as is. I am still weaning off my Morphine and Adavant. So, when I get to go home there will be a lot going on. First I will be on oxygen and a medication for my pulmonary hypertension. My mommy and daddy will have to monitor my oxygen saturation's daily to make sure my lungs are working properly. I will then be on a medicine for reflux, aspirin to keep my shunt from clotting, and will still be weaning my morphine and adavant. So hopefully we will be headed home soon. My mommy and daddy are so very excited to see me doing so well. All the doctors and nurses are happy to and feel that I am on the right track.

Please remember to say a prayer for me.

Love, Drew and Family

2 comments:

grandma great said...: Dear Great Grandbaby Andrew,
Brandon says that he hopes that
everything gets better and that
goes for me also so you can all
go home before winter sets in for
good.
You continue getting well. It
has been a long process.
Love forever,
Brandon
Grandma Great; October 15, 2008 at 4:29 PM
Anonymous said...: What a cute picture, little Drew you are so cute. Glad to hear you are doing so well.; October 16, 2008 at 7:59 AM