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.

Tuesday, March 10, 2009

Uncharted Territories

When I called this morning I was very pleased to hear that Maxton was being weaned down on his oxygen to about 94 and he didnt have any episodes overnight. However, when I got here this morning the nurse was telling me that they may have to put chest tubes in. apparently, Max's left lung now has a hole in it. This is not uncommon in CDH babies, but the typical treatment is a stay on ECMO. As I have already said, MAxton is not really an ECMO candidate. Yesterday his head ultrasound showed that his brain bleed was still a stable grade 2, but it had not improved any. The doctors are sort of confused as to what treatment would be best. A few doctors still recommend ECMO so as to not further damage the lung, but the risk for brain damage because of the preexisting bleed is still very high. Another set of doctors feel that perhaps a "chest" tube should be placed in the abdomen to allow the air to escape. Typically, a chest tube is inserted between the ribs, but with Maxton's organs still being herniated this is not safe. They would like to be able to just repair his hernia and then put in chest tubes, but they feel like the amount of swelling on Maxton would not allow for a good repair of the hernia. They have been debating since early this morning trying to figure out what to do. David and I feel like the tummy chest tube is the best option as we would not want MAxton to have a huge brain bleed on ECMO resulting in death or severe brain damage. The doctor we met with agrees, so hopefully the surgeon will agree as well.

In the meantime Maxton is doing very well being weaned. I am so proud of him and feel like the prayers and pep talks David and I have been giving him are definately working. He hasn't had an episode today and his oxygen is now at 78 and he is still satting 100 both pre and post. His vent setting is still high but they are hoping to wean that starting possibly this hour. His bi carb drip is gone and his dopamine is down to 10, which was the goal from yesterday. His vitals are right where they want them. If it wasn't for this hole in his lung we would be having a good day. I appreciate everyone checkin in on us and have read everyones comments. I wish I could reply to you all individually, but know that I have been reading your well wishes!! I will hopefully update later about what the doctors decide!


Owain's mommy said...

Maxton is in my prayers daily. He has proven him self to be run tough warrior!

Sending lots of prayers and love your way!


P.S I honestly believe that having a pep talk with your little man works. It worked for Owain when he was having a bad day.

April Swarthout said...

Still praying for you guys and check in everyday.

Vince and Patty said...

Charlie had a chest tube placed in his left side just a few days after birth because he had an air leak as well. It help him get to surgery. Many prayers to Maxton and his doctors coming from Syracuse. You guys are doing a inspirational job.

The Creekbaums said...

Baby Maxton - so glad to hear of your great and improving day. Keep up the good work!

You are remaining in my prayers,

Tracy Meats said...

Many prayers for Maxton! Hope you get to see the vent settings weaned soon and he tolerates that well. Hope your doctors can all agree on a care plan for Maxton and go for it. Keep fighting Maxton and hugs Ashley and David!

Tracy Meats - mom to Ian, born with a LCDH on 4/3/04 and WY and CO State Rep. for CHERUBS

Stephanie said...

Sounds like the chest tube is the way to go. We are still praying for sweet Maxton daily and checking your updates.

With love,
Kamryn's Mom

Rhonda in KY said...

Glad to hear the wean is so far so good. Keep it going Maxton! Hopefully the chest tube does the trick.

Lots of love & prayers from all of us.

edensgate said...

Baby Maxton, Ashley and David,

We just received your blog address, and wish to inform that our thoughts and prayers are with you everyday! We can't wait to meet our grand nephew and spoil him. Great grandmother sends her love and best wishes for you and your little man. We will continue to pray for each of you everyday! If we can be of any assistance in any way whatsoever, please let us know! We will now be checking on Maxton every day online. We love you all very much! Stay strong and God will provide!

Aunt Leslie, Uncle Chris and
(Great) Grandmother Juanita