Watch me Grow

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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
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Wednesday, April 29, 2009

New Journey: Weaning


Hello,

Today things have been pretty good, except that they just poked and poked me trying to get a new IV in and no luck. They will have to try again later.

Today they are working on weaning down my heart medicine and my oxygen with hopes that I will be off both tomorrow. If all goes well they will likely transfer me to the floor tomorrow. My mommy and daddy are so very proud of me and so very thankful that the Lord has watched over me and given me strength. We are all very excited as the floor is one step closer to home.

Please remember to say a prayer for me.

Love, Drew and Family
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Tuesday, April 28, 2009

New Journey: No more Breathing Tube



Hello,

Today has been a good day. The surgeon said that the surgery went very well. Then the doctors in the ICU thought I was doing so well that they decided to extubate me and now I have no more breathing tube or ventilator. They will wean my oxygen overnight and then tomorrow they will work on weaning my morphine and milrinone. I have been doing so well that they thing I might be able to go to the floor tomorrow.

After the way things went last time this is very big news. My mommy and daddy are so very excited and so very proud of me. Tomorrow I should be able to give them lots of loves. They want me to tell everyone thank you for all your thoughts, kind words, gifts, and prayers. It truly means so very much to my family and I.

Please remember to say a prayer for me.

Love, Drew and Family
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New Journey: On By-Pass Machine

Hello,

They just put me on the heart and lung by-pass machine. I should be on this for about an hour.

Please remember to say a prayer for me.

Love, Drew and Family
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New Journey: Surgery has begun

Hello,

My surgery has just begun and should last about 4 hours. I will let everyone know when I am out and in the ICU.

Please remember to say a prayer for me.

Love,

Drew and Family
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New Journey: Off to Surgery




Hello,

At 7:30 this morning they took me back to the OR. It will take between an hour or two to prep and then 4 hour open heart surgery. I will let everyone know when they start the surgery and then when I am out and in the ICU.

Please remember to say a prayer for me.

Love, Drew and Family
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Monday, April 27, 2009

New Journey: Tomorrow is the Big Day



Hello,

I have enjoyed a nice weekend with my family. Today my sisters went back to Kalispell with my uncle Jon and aunt Mimi. Then me and my mommy and daddy spent 7 hours at the hospital for my pre-surgery appointments. Now we are just spending some time together. My mommy and daddy are very worried because I am a high risk case. We all went through so much last time and are all praying that this time everything goes nice and smooth. I will keep everyone updated on how things are going.

Please remember to say a prayer for me.

Love, Drew and Family
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Saturday, April 25, 2009

New Journey: Day Downtown


Hello,

I had a wonderful day with my family today. My mommy and daddy have been really worried, so a day away from it all is just what we needed. Me, my mommy, my daddy, my sisters, my aunt and uncle headed downtown to the Seattle Center where they had a fair going on. Here are a few pictures of our day. The first one is me just after getting my hair washed, as you can see it is a little crazy. The next is me riding the carousel.

Please remember to say a prayer for me.

Love, Drew and Family


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Friday, April 24, 2009

New Journey: Heart Cauterization




Hello,

Today I had my heart cauterization. The doctor told my mommy and daddy that it went well and that my pressure levels look good. What this means is that they can do my surgery on Tuesday. However, there were a couple of things the doctor reviewed with my mommy and daddy. First it looks like there is a narrowing of my pulmonary artery on the right side. The surgeon did review and feels that he can fix this when he is in there on Tuesday. Then he let me mommy and daddy know that due to my past issues with my heart and lungs and spending 18 days on life support after the first surgery does make this one more risky. I trust in the Lord and believe that he will watch over me and give me the strength I need to come through this surgery stronger than before.

I will spend this weekend enjoying time with my family. On Monday my sisters go back to Kalispell with my aunt Mimi and uncle Jon. I also have all my presurgery appointments on Monday, so it will be a very busy day.

Please remember to say a prayer for me.

Love, Baby Drew and Family
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Pictures for you


Hello, here are some pictures of me. I hope you enjoy. I will add another post to update you of my journey to Seattle.



Please remember to say a prayer for me.



Love, Baby Drew and Family



























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Saturday, April 4, 2009

Now comes Da Da

Now my daddy is happy. I now say da da! Of course my mommy reminds him that the ma ma came first.

My next trip to Seattle is coming very quickly. We will leave here on the 22nd of this month and if all my tests go well my next surgery will be the 28th. My mommy and daddy are very nervous. They cannot believe how quickly this came. Everyone has been saying a lot of prayers for me and that really means a lot to both me and my family. As our trip nears I will be blogging more to keep everyone updated of the next part to our journey.
Please remember to say a pray for me.

Love, Drew and Family
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