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.

Kellen got to go home this morning and Liz said he has been as happy as can be. It appears he is going to get through this little bump in the road with no problems at all. We will just keep praying for continued healing. It will be a little while before we will know if this improves his comfort while eating, but we are certainly hoping so. Other than that, he is a whooping 10.9 lbs, so almost to 11 lbs. 

Carson had a great day and got to try out his bumbo seat for the first time. He is absolutely precious. He is a little over 10 lbs so he has a little catching up to do but still has plenty of chub. 

Carson is having a bronchoscopy tomorrow morning at 8:30 AM. We would appreciate all your prayers for him tomorrow. 

We will get information about his healing that will probably determine whether they will give him a chance to take out his trach or leave it in and have him go home with it. A trach requires so much more acute care while he is home and we are really praying he can prove everyone wrong and go home with nothing more than oxygen. 

Dr. Yang does not believe they are going to have to do surgery for his G-tube, so tomorrow will just be a bronchoscopy. His G-tube has not leaked for a couple days! 

Thank you for your prayers!

quick update - but with lotsa pics!

Kellen came through surgery fine!  They repaired inguinal hernias on both sides and a small umbilical hernia.  He is pretty sleepy, but otherwise doing well.  Praise Jesus!  Thank you for praying for this.

Carson did well too today and therefore gets to do 14 hours on trach collar tomorrow.  Yay Carson!!!

Enjoy the pics of our brave little men!

Carson: "WHAT? My brother is here and I don't get to SEE him?
Who is in charge here? This is completely unacceptable.
I wanna MANAGER."

Carson: "Imma give that ventilator
a left hook, then a right hook,
then, Imma get OUTTA HERE."

Carson...rockin' the trach collar

Kellen...one mellow little dude

Kellen: "Oh, really?  Milk you say?  Yes, please." 

Kellen: "Oh Mommy...you're HILARIOUS!"  

Time with Grampe and Meme Bunch

Carson and Kellen got to meet their Great Grampe Bunch for the first time today! They were both fans of him!

Carson had a good day today! He was on the trach collar for 10 hours and a blood gas was taken at the end of the trial. The CO2 was 55 which is great!!! He continues to do really well, we are awaiting a final decision on what to do about his Gtube. Dr. Yang is supposed to look at it to decide if a revision is necessary. It leaked over the weekend but did not leak at all today so we just ask for prayers as to the next step. We, of course, would rather it not need to be revised but if it is going to need it...the sooner the better in my mind. Carson's medication list continues to shorten...he is now off potassium and sodium and both levels have remained in the acceptable range.

Kellen is doing great! Please keep him and the surgeons in your prayers tomorrow. Surgery to repair his inguinal hernia is scheduled for tomorrow at 2 pm. It should not take any longer than a couple hours and is a fairly routine surgery. He will stay overnight and assuming all goes well, will be discharged the following morning.

Thank you again....for everyone's support, love, and prayers!