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Our son Maxton was diagnosed with left-sided congenital diaphragmatic hernia (CDH) at his 19 week ultrasound. Maxton was born on 3/3/09 at Vanderbilt University. He fought hard for 18 days but earned his wings on 3/21/09. Maxton was an inspiration to many during his brief time on earth and has forever changed our lives. If your child is diagnosed with CDH, please feel free to contact us. Maxton may no longer live here on earth, but he will live forever in our hearts...

To start at the beginning of our story click here and scroll all the way to the bottom.

Monday, March 9, 2009

Extra prayers today please!

After meeting with the doctors this morning it has been decided that Maxton needs to prove that he can be weaned on some of his support. Yesterday his oxygen was bumped down to 80, but overnight his nurse moved his head to the other side and he had an episode, so it was bumped back up to 100. His vent was also bumped back up to 47. Basically, they will be weaning both of those meds today, along with his dopamine. Please pray that he tolerates this well! They are very concerned about the amount of support that he has needed thus far and really want to see him needing less to maintain himself. I am praying that everything goes well. ECMO was again mentioned as a possibility if nothing else is working, but the risks with it are HUGE due to Maxton's brain bleed. The are doing another ultrasound today to determine if the bleed is still present. Please pray that it isn't, then maybe Maxton can be placed on ECMO. I feel guilty because I prayed so hard that he wouldn't need it and now that he does he doesn't qualify for it due to his brain bleed. Hopefully, he will be able to maintain himself today and show the doctors just what he is made of.

Also, they have mentioned the possibility of his "episodes" being seizures. They are giving him some anti-seizure meds in the event that they are seizures. If they are seizures it could indicate that the brain bleed has caused some damage. However, it could also mean that he will be able to be weaned off the support that he is on. He was doing well yesterday with the weans other than the episode after his head was moved.

I feel like today is going to be a long day for us. I am really praying that he does well with the weaning as this would make the doctors much more comfortable with the inability to go on ECMO and comfortable with Max's plan of care. I plan to update later assuming there is a computer available. Thanks for everyone's love and support. My little guy is fighting as hard as he can and I cannot explain just how proud of him I am. He has already taught me so much and I will never be the same.

12 comments:

Dotty said...

MANY prayers being sent, if you dont mind i will also post some of your info on my carepage for zach, the more prayers the better right? Zach also had a bleed in his brain, subdermal hematoma, it wasnt caught until 9 months old though, and it was old then, however it had caused a big seziure and thats how they found it. i know how scary all of this is. i pray for peace, comfort, healing and more for you all. your a strong momma and Maxton is a strong baby. hang in there!! keep your faith!
God Bless
zach's mom cp=zacharydavis

Craig and Kristi Kuehl said...

Ashley-

It kills me that Maxton is having to fight so hard. I will pray for the brain bleed to be gone and
ECMO will again be an option. It sounds like you and David are staying strong--Max can feel that. I am just a mess thinking about this CDH rollercoaster, and knowing that I am next in line for the ride. It is so crazy that things change from one minute to the next, but we are all pulling for him.

God is with you and Max, and he is listening to all our prayers. Keep us posted :)

Lisa said...

First of all, don't feel guilty for anything! You know you always have Maxton's best interests in mind when it comes to anything you do. I pray for him at least once an hour and plead for God to see him through this. This is part of the rollercoaster, I hope this bump in the ride passes quickly.

DrmCtrsLtSl said...

I will be praying for you. I'm sorry Max is having to fight so hard, but he can do it, I have faith. I follow many CDH blogs. My friend's blog is called "Letters to Catherine." They are a wonderful family, the Davis'. Will Continue to pray for strength, and progress. Love you.

Joy said...

I know you don't know me, I'm a friend of Racheal Phillips. She has been askign me to keep baby Maxtonin my prayers and I want you to know that I have been & with your permission, I'd like to link your blog to mine so I can ask my friends to keep you in their prayers as well. I also know someone who has a prayer blog...

I'm continuing to pray for your little fighter and for you daily!!

Tracy Meats said...

Praying for your little boy that he can be strong and you see a change today. I hope the brain bleed is gone and his support can be weaned too. Maxton is fighting hard and we all are praying and cheering him on. Fight Maxton fight, show those doctors how strong you are!

Sending you 3 lots of love, positive thoughts and energy for today, Tracy Meats- mom to Ian, born with a LCDH on 4/3/04 and WY and CO State Rep. for CHERUBS

Jaime's World said...

We pray for little Maxton often! We want nothing but the best for you all of you.
We're so sorry that you're on this CDH roller coaster...we're all learning how much it stinks!
Just keep the faith and know that Maxton is giving it his all! :-)
Sending our love and prayers,
Sheryl & Tom

Beatrice Blount said...

Ash, this is your old roomate! I'm so glad to hear that Maxton is fighting so hard. I'm adding your family to my church prayer list. You are of course in my prayers, and will continue to be.

Gina said...

We are praying really hard for Maxton. He sounds so much like Wyatt. Wyatt too had a brain bleed- an IVH grade 4 and was on ECMO for CDH. He has had a roller coaster of a ride, but is doing fine. Keep your faith and think positively.

Gina
Wyatt's Mom
http://wyattjameskoger.blogspot.com/

Elizabeth said...

Keeping you all in my thoughts and prayers. I hope that there is a change and it gives more options. Don't feel guilty about ECMO - I so recall not wanting her on it and then once she was - knowing it helps but also knowing the risks too. Scary stuff.

Sending Maxton prayers and Lung Function Chants too,
Elizabeth

Ashworth Family said...

Of course we'll say extra prayers for Maxton. We check your blog daily and hope for good news :)

Don't feel guilty about one thing. You have done nothing but be an awesome, loving mother- exactly what Max needs!

Jaime Smith said...

Keep your head up and keep your eye on the prize. We pray for you every night (I think Reggan just likes saying baby maxton) in hopes that every little prayer will help your little miracle. Ryann is your personal angel (we have had the talk) and is there to help him fight this!

With LOVE, the Smith's