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."

Carson had a much better day today than yesterday. He was his smiling and happy self. The doctors have fitted him with a new attachment to his trach that puts the oxygen and humidity directly into his trach. This will help the area that was more irritated heal and prevent further skin breakdown. We just have to be more careful, because any water in the tube could go into his tracheostomy and down into his lungs. Carson did very well on his bottles today and took the most he ever has with Elizabeth this morning. 

He has also had numerous visitors in the past few days and again we thank all of you for your support and prayers. This next week will hold a lot of important events in the process of getting Carson home. We all are excited and looking forward to February 28th as the tenative discharge date!

Today we had a little bit of a scare with Carson. He was a little grumpier than usual and couldn't be consoled most of the morning. The physicians began to be concerned he had an infection which was why he was so inconsolable. Of course, we all were really sad considering how close to discharge he is... about 10 days. The wonderful news was after all the blood work including a CBC, CRP, sed rate, and blood gas nothing indicated he had an infection.

Preston and Liz did discover during his trach care that he had some increased redness around his trach. This is not surprising considering the trach collar places hot, moist air continually into this area. It makes for a great place for a wound to develop. That may be why he was so grumpy, because that area was painful when he moved. They have placed a dressing over it to help protect it and we are hoping he will have a better day.

Other than that, he got to try his humivent, which is what he will use on the end of his trach for when he travels. He did very well with this. 

Kellen seems to be doing much better after Preston and Liz started medication for reflux. Both boys are interacting so much more with Preston and Liz. Kellen and Carson are giving Mommy and Daddy lots of smiles. 

Yesterday reminded us all to continue praying for protection and healing for Carson. We are all anxiously awaiting the day when he gets home. Liz and Preston are amazing... I would be incredibly overwhelmed with all the new equipment, information, staff to train and get to know, and logistics of taking Carson home; however, they have been so strong through the whole process. I know it is due to all the prayers being said for their strength and peace. 

Thank you to all of you.

Preparing for home

Well if anyone knows of a school bus for sale...the Clark's may be looking for one to buy to carry the needed equipment for Carson. No...I'm just joking. We had training today on some of our home & travel equipment. We will definitely have an entourage and I think we will limit the amount of traveling but it is definitely doable and MUCH better than if Carson was still on the ventilator.

Carson had another good day. He took 70 of 90 mL on both of his bottle feedings. He tolerated 15 minutes on the Passy-Muir valve 3x today. We heard a few little noises (which just melted my heart) but we believe he is losing a fair amount of air through his stoma site. Meaning not as much air is going through his vocal cords and out his nose and mouth so he isn't able to make as much noise. We are going to consult with the ENT on this.

Kellen continues to do well. He is now taking Zantac to help with reflux and I do think we have seen some improvement!

Please continue to pray for a smooth transition home (with home equipment and nursing and...specifically the 2 1/2 hour drive)