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)

Carson had a fantastic day today. He tolerated the Passy Muir valve very well!!! We were so proud of him. He is getting to use it 2-3 times a day for about 10 minutes. As he gets more used to it, they will increase the time. Some of the nurses said that babies often do not tolerate it until they are 6 months or older. We are so proud of him. Unfortunately, he was so calm while on the Passy Muir valve he didn't make any noise. We tried all sorts of bribery, but for right now, he is holding out for a better deal before he makes noise. 

Liz and Preston are starting to check off the list of things they have to accomplish before going home. Tomorrow is training on the home equipment. Next week they have a night with Carson doing all his cares. Sunday is CPR training. Lots to do, but very exciting. 

Carson had a good blood gas again this morning and so this means he is tolerating the trach collar very well. He is almost 11 lbs now. 

Kellen also had a great day!

Happy Valentine's Day!

Carson had a good day today. His G-tube has leaked just a small amount, but it never saturates the dressing. As a result, they still believe it will be fine and not require surgery. 

On the Passy-Muir valve trial, that has been pushed back to Thursday, so Liz and Preston are very excited about Thursday. 

They also are watching Carson's blood pressure, because it has been a little elevated. For right now, they can just watch it, but if it continues to rise, they may need to consider medications. 

Kellen continues to be upset while trying to eat. We believe he may have reflux, which is causing him to have increased pain when he eats. Other than when he is eating, he is a very happy baby. As a result, the doctor is going to start Zantac for reflux and see if this makes a difference. 

Carson also has reflux and has been taking Prevacid for quite some time. 

All in all, a wonderful Valentine's Day for the Clarks. We hope you and your families all have a blessed day getting to celebrate the loved ones in your life.

Carson...looking ever the diplomat...
"Good?  Why, yes ma'am, I'm good...and you?" 

Kellen..."Just lettin' you know
how it's going to be, Mom."

Happy Hearts Day, indeed.

Happy Valentine's Day to all of our wonderful friends and family!

Thank you for your prayers and support. Carson had a good day on trach collar for his first full 24 hours. They are going to keep him on trach collar as long as he continues to do well. He is using between 25 to 30 % oxygen, so very close to room air at 21%. His carbon dioxide was a little higher on his blood gases today, but the physicians are not concerned. He was also pretty upset when the blood gases were drawn, so that can make a difference. 

He passed his hearing screen today. I was unaware, but the ECMO and medications he was on in the beginning have an increased chance of causing hearing damage. But so far, there are no signs of hearing damage. He will be screened yearly until he gets to school-age. 

Tomorrow will be a big day (Valentine's Day) as they will trial a Passy Muir valve for the first time. This will be the first time for Preston and Liz to hear his sweet voice (probably going to be crying, but they will still love getting to hear him). They do not believe he will tolerate the valve very well in the beginning, but being able to hear him will be a sweet present for the two of them and all of us. 

AND...drumroll please...the tentative discharge date for Carson from the hospital is Feb 28th!!!!!!!!!!!!!!!!!!!!!!!!!!!!! 

Hip hip hooray. This is if there are no setbacks and no changes. They have a lot of planning to do before he is discharged with getting home health nurses trained and set up, medical equipment ordered, CPR training, passing his car seat test, G-tube not having any leakage and the list goes on. Be praying for guidance for truly competent individuals to be caring for Carson at home. 

We are all very excited!!!!!!! Thank you for your prayers!!!!!!!!!!!!!

wow

Carson is up to 10 lbs 10 oz! Wow, he is packing on the weight. He found out Kellen was about 11 lbs and decided he needed to catch up. 

Kellen continues to do very well! 

Carson had a wonderful day on trach collar on Saturday. His blood gas after 16 hours was C02 of 52. That is AWESOME!!! Better than his blood gases while on CPAP. As a result, today will be his first 24 hour trial of trach collar. We believe he will do wonderfully and he will be one step closer to going home. 

The doctors feel he will probably go home in the next 3 weeks or so. Thank you so very much for all the prayers! 

Keep praying for all the details of trying to arrange care for Carson in Dexter. We are praying for a wonderful home health nurse that will take fantastic care of him.