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.

important update

Carson had a good day today. He spent 16 hours on trach collar and did quite well. 

The results from the bronchoscopy showed three areas of concern. His epiglottis is tight and slightly rotated due to the effect of the mass as he was developing. He also has an area of blockage in his trachea below his larynx and right above the stoma for his tracheostomy. The areas of blockage are not complete, but they are obstructing part of Carson's airway. There are surgeries for most of this, but they believe time will fix these issues. 

As a result, Carson cannot have his tracheostomy decannulated (or removed) until later. They are unsure of whether it will be months or 1-2 years. It all depends on how he tolerates the obstructions and how fast he grows. They are going to continue to work towards putting him on trach collar 24 hours a day. Then, they will start trials of Passy-Muir speaking valve. Some babies tolerate this well and others do not. Hopefully, we will be able to transition Carson to a Passy-Muir valve, so he can make noise. After that, they will work on weaning Carson to a capped trach, which would require him breathing in and out his mouth. How he will tolerate this is unknown. Even though they won't decannulate the trach now, they will be working towards that goal. 

In addition, Carson's right recurrent laryngeal nerve was severed in surgery. We already knew this and as a result his right larynx is paralyzed. They do believe he will still be able to speak, but the quality of his voice may be different. 

The plan is still to try to have him out of the hospital in early March. There are many variables, but this is exciting for all of us.

Carson came through his bronchoscopy very well. He is such a cutie pie! Liz and Preston have been able to spend the whole day with him. We do have a lot more information about his airway after the study. However, we do not have all the details just yet, but will have a much more in depth update tomorrow. 

Most importantly, thank you for all your prayers for the doctors direction and wisdom and safety for Carson. 

We do know Carson will have to have the tracheostomy at least a few more months, because there are areas of obstruction. Beyond that, we will give more details as soon as we get them. 

Kellen had another great day and is doing very well after his surgery on Tuesday.