Our Sweet "Heart": Extubation

Tuesday, November 24, 2009

Extubation

Despite my belief that it wouldn't happen any time soon, Maddox was extubated yesterday. He traded his ET tube/ventilator setup for nasal canula/CPAP support, which means he is still getting oxygen but now it is continuous high pressure air flow up his nose with Maddox taking every breath and having to do more of the work.

He traded this:
(the little helmet/strap thing was put on in preparation for CPAP.)

for this:

It might not look better, but the fact that there is no longer a huge tube down his throat(other than the NJ tube which is how he eats) makes this new accessory preferable.

It is interesting that on Sunday Maddox was on pretty high vent support, having many stretches where he just wouldn't breathe unless the vent forced him to. He looked far from being ready to lose the ET tube. His nurse thought it was unlikely that they would pull the tube on Monday. We had a family fast for Maddox and, once again, we have seen, the hand of the Lord. My heart is full. Miracles happen and prayers truly are answered.

My sister Aimee flew to Boston yesterday! We spent some time with Maddox, and snuck in a movie too. We saw New Moon. I'm not sure it was meant to be a comedy, but our theater was full of laughing people. Seriously, some parts were hilarious!!Anyway, we had fun!

I am at the airport getting ready to fly home to Texas and then drive to my parents' home in Missouri to spend Thanksgiving and pick up Brynna and Tracen! I am sad to leave Maddox but I am ecstatic about being with my little family for a few days!!
That's too many emotions in one body. I am determined to have a wonderful time and am so grateful for my sister's generosity in coming here to watch Maddox and my sister Ashlie and my Mom as they are home watching a house full of sick children. You guys are awesome!! I know Aimee can give Maddox a good talking to if he gets ornery, but I'm praying he behaves himself and takes advantage of the holiday season to put on a little weight.

I hope you all have a wonderful Thanksgiving this week. I know I have so much to be grateful for.

Posted using BlogPress from my iPhone

4 comments:

AllisonNovember 24, 2009 at 11:19 AM
Way to go Maddox!!! CPAP is a HUGE step in the right direction. We will pray that you can support your breathing while getting some assistance with the high flow oxygen too. Feast on those tube fed calories and see if you can't put on a few more ounces this week ok little guy??!!
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Erin SNovember 25, 2009 at 6:50 AM
Yay for Maddox! I'm glad he is progressing a little each day. Heavenly Father is definetely watching over your little guy.
And you got to see New Moon with your sister, fun! Enjoy your Thanksgiving with your family!
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Brita DietzelNovember 30, 2009 at 7:20 AM
Dear Dixon Family,

Thank you for sharing sweet Maddox's blog with us! I want to look through Maddox's journey but from your last post it looks like he is making great progress. Hope he has continued to gain strength and healing over this last week.

It is such an emotional and wearisome journey for all of you. Taking it a day at a time and often even a moment (I rememebered) helped us get through.

We have been thinking of your family often this last month. We will keep you in our thoughts and prayers and so glad to learn more about your special family!

Take Care,
Brita Dietzel
Ellianna Grace Foundation
bdietzel@elliannagracefoundation.org

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Jake and RachelleNovember 30, 2009 at 11:56 AM
We hope Maddox behaved while you were gone and that he continues to do better. How great that you were able to make it home for Thanksgiving. We hope you enjoyed your time with your family.
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Maddox Revere Dixon

Welcome to our story of modern day miracles. We have seen first hand the wonders of our Heavenly Father and have been joined with people all over in earnest prayer for a baby boy... our Miracle Maddox.

Maddox was diagnosed prenatally with Aortic Stenosis and Mitral Regurgitation. We found out at 27 weeks gestational age that he had a congenital heart defect. By 29 weeks he was in heart failure and had developed hydrops(fluid under the skin, in his abdomen, and around his heart). The plan was to deliver him at 30 weeks via c-section and after birth attempt to get him stable enough to try to open up his aortic valve. We were also given the option of doing nothing and delivering vaginally once he had passed away, which they thought would be soon. The doctors gave him a less than 1% chance of survival if we tried to intervene. We started planning his funeral. The week we were scheduled to have the c-section we were given the option of flying out to Boston to do a fetal intervention where they would essentially operate on Maddox in the womb. The doctors in Boston weren't even sure that Maddox would be alive once we got off the plane. Two days later we had the fetal intervention where they ballooned open the aortic valve, put a stent in the atrial septum as well as a hole above the stent, and removed some of the fluid in Maddox's belly. Maddox was the 9th baby with his unique heart condition to have undergone this type of intervention. It was successful, and Maddox was delivered at 37 weeks in Boston, where he underwent open heart surgery at 3 weeks of age. At two months of age Maddox came home to Texas. We are now trying to adjust to the new normal: multiple weekly doctors' visits, g-tube feeds, medications administered throughout the day, insurance claims, and including our three other children in the care of their amazing little brother. What an adventure. More surgery is in the Mad-man's future, but he has a future, and for that we will be forever grateful.