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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.

Saturday, March 7, 2009

A little Better

Last night they got us a room at the hospital so that we would be close if Maxton had another episode. So far he has done well. The vent was at it's maximum setting of 50 yesterday and today they have been able to wean it to 42 and change the way Maxton is laying, all without an epsiode. I am hoping that this trend continues.

The doctors in rounds this morning were much more positive than the doctors yesterday. They are pleased that Max has been doing well with his sats. The main concern is some brain damage due to low CO2 levels because the vent has to be so high. As of right now ECMO is still not possible due to the brain bleed. They are doing an ultrasound today to check the bleed in case Maxton has another episode to see if ECMO if possible later. The doctor said they have learned that Maxton doesn't like too many changes at once and hopefully they are figuring out his "plan of treatment". I have learned these babies are so tempermental and each has their own plan of their treatment.

Todays plan: very, very slowly wean the vent
try to wean off of most of the antiobiotics
wean the dopamine a little
Add a monitor to montior blood flow to the brain to see if brain damage is likely occuring or not.

I think that is it for the plan. I am so proud of my little man. I told him we couldn't wait to hold him and love on him and he kicked his little foot this morning. I think he can't wait either. Oh yeah, they are also increasing his fentanyl to try to stop some of the movements. he was awfully wiggly for a sedated baby this morning. :-) Of course we liked to watch him move a little.

Thanks for you support and prayers!

7 comments:

Owain's mommy said...

I am so proud of your little man too! Max is putting up a good fight! He is in my prayers daily! Stay strong!

Amber

Jaime's World said...

Max, we are all so proud of you, it's OK to take baby steps when it comes to change! :-)
You are constantly on our minds! Here's to a steady trip towards stabilizing!
Love and prayers,
Sheryl & Family

Dotty said...

way to go big guy!! keep on fighting!! moe Prayers coming,God Bless!

3djones said...

We're so proud of your family and the love & faith you share...Max's determination to stay with the loving family to which God has given him is evident in that little foot-kicking and every wiggly episode you see. Just know that you are continuously in our prayers and thoughts, everywhere we go, from the places we travel to our little town back home... We love you bunches & always!
"The Joneses across the street!"

Lisa said...

Thinking of you guys day and night and praying hard!

Craig and Kristi Kuehl said...

We will take any baby steps in the right direction! Just goes to show how strong these babies are and sometimes a little stubborn--doing things at their pace--not ours! I have talked about you all day, and even called in the "prayer posse" for Max. Continue to keep us updated :)

Elizabeth said...

I don't like these rollercoaster rides and you are not the first family with a CDH baby that was told you have "the sickest baby in the NICU".

Maxton is absolutely beautiful - and a fighter - keep your hope and faith.

With thoughts, prayers and Lung Function chants,
Elizabeth