So far so good!! Looks like Carson gets to go home on Tuesday. Liz and Preston got everything arranged at home and all the equipment Carson needs is now in their home. 

He has also had a wonderful day! No leaking from the G-tube and lots of smiles. With his Passy Muir valve, he is making A LOT more sound. His primary nurse, Christi, who has been amazing through the entire journey, got a video of Carson making lots of noises. We will have to post it as soon as we get it from Liz. Christi and I were both so excited to see him vocalizing so much. It was precious. 

It is somewhat surreal to think about visiting Carson somewhere besides Cardinal Glennon, but we will all rejoice when he is safely at home with his family. We will always have truly grateful hearts for all the fantastic doctors, nurses, and staff at Cardinal Glennon, who have made this journey home with Kellen and Carson possible.

Posted by Sarah

Well, so far by inflating the balloon on the G-tube it has stopped leaking! For right now, they believe this will be a resolution and Carson will get to go home on Tuesday. 

Today, Carson took his first stroll in his car seat and stroller. We took a trip through the NICU and all the nurses were so excited to see how well he was doing. He tolerated the stroller and car seat very well. He wasn't sure about it at first, but by the end, was a pro and ready to take a nap. Thank you for all your prayers! 

Liz and Preston are in Dexter and we are all so thankful for the wonderful people of Dexter and the cooking benefit for the Clarks.

Very short update today! Carson's G-tube leaked again today after the change. We will see what the doctors decide over the weekend. Right now, we do not really know if he will be going home on Tuesday or not. We will just keep up the prayers and wait to hear the decision. 

Liz and Preston are going home for the weekend to prepare their home for when the boys get to come home. Nana Bunch and Aunt Sarah will be holding down the fort in St. Louis while the Clarks help Preston and Liz in Dexter.

Much better day for Carson! Praise Jesus! 

He is doing much better on his oxygen saturations. Last night, he had some problems with desats, but today seems to be doing fine. 

Dr. Yang changed his G-tube again rather than do a revision surgery. He is trying a 16 French G-tube and believes that may prevent further leaking. Time will tell as always.  :)

But regardless, we are thankful!  And so thankful for your prayers too!

news story link and today's update

Today was a little discouraging for Preston and Elizabeth. Carson's G-tube began to leak considerably again. Therefore, Dr. Kavi is talking to Dr. Yang, the main pediatric surgeon, about revising the G-tube. Essentially, this means removing the one he has now and putting it in another location. Carson will have to go back to the ventilator for surgery and then begin the slow process of weaning back to his trach collar again. Just be praying for direction.

We all want to do whatever we need to do so Carson can grow and thrive. However, if he has to have surgery, it will require a longer stay in the hospital. The emotional ups and downs of having a child in the hospital are very difficult, so please keep Preston and Elizabeth in your prayers for continued strength, peace, and patience (patience always seems to be a lesson we get to learn over and over again).

Here is the link to the news story on the Clark family if you have already not seen it:

Clark's Story on TV News

reunion

Carson and Kellen had a reunion today!!!  They got to see each other for the first time since December. It was a great day! Carson's labs for tumor markers are continuing to go down. The AFP was 300 and is now 95.

The tenative date for all 4 Clarks to go home is a week from today. :)  Hip hip hooray! 

I also have to say the Clarks are celebrities now as they have been on a news station in St. Louis with their inspiring story! They couldn't have interviewed a better family. We love them tons!

The deep sleep of contentment.
(How about that little smile of bliss Kellen has on his face!)

in the news(!) and prayer requests for upcoming weeks

Kellen and Carson are EXCITED, because tomorrow they get to see each other for the first time since December!  Kellen is getting to go to the hospital for a media interview with Dr. Yang, Preston, Liz, and the boys. It is for a local news group in St. Louis.  Dr. Yang's interview is at 9:30 and then they will interview Preston and Liz. We will let everyone know if we can get a copy of the interview.

Carson is tolerating his Passy Muir valve very well and is making a lot more noise than he did in the beginning. He is up to 30 minutes three times a day with the valve. His neck is healing very well where it was irritated and they no longer have to do special dressing changes. They are not using the attachment to his trach anymore, because Carson did not seem to do as well as with the trach collar then, so we are back to the trach collar alone. 

He had blood work drawn today for the tumor marker labs. We do not have the results yet. All in all, still planning on Carson being discharged from the hospital 2-28-12.

Kellen is 23 inches and 11 lbs and 11 oz. Carson is 11 lbs. 4 oz. and I am not sure how long he is but is a little behind on length. 

Prayer requests:

1 in 5 babies who go home with a trach have a morbid event where CPR is required. Oftentimes, it is a result of the trach getting plugged off by mucus. If that happens, the baby cannot breathe and goes into respiratory and cardiac arrest if it is not corrected. We ask for all of your prayers for Carson to be protected from this and a variety of other possibilities that could result in serious adverse effects. Preston and Liz are the most prepared individuals I have ever seen, but of course, we hope it never comes to having to do CPR or emergently changing the trach. We pray for God's protection over Carson until he is fully healed and without his trach.

Preston and Liz have so many details to coordinate for Carson's care and I just ask for continued prayers for their strength and health in the coming weeks and months. We can all join in praying for peace and wisdom for them in the many details in the future.

We ask for prayer for competent and compassionate individuals in the home health agency that will be watching Carson, particularly at night, and that Liz and Preston will be able to trust them to care for Carson.

Thank you so much for joining us in prayer!!!

"Fight Tiger...Fight for old Mizzou...
Right behind you...everyone is with you."
Indeed we are little one!
(Carson, humming the first lines of the Mizzou fight song)

Kellen:  "Seriously?  I get to see Bro Bro?
That. Is. Awesome."