update for today

Carson is through his surgery. Praises to Jesus, he did great! He actually had been able to wean down on his vent before surgery, but now that he is sedated, he is back up on his ventilator settings. But that is expected, and hopefully, he will wean soon. The surgeons placed a G-tube (a direct tube into his stomach) so if he needs long-term feeding, there will be access. They took out his IJs (intravenous lines) and this will allow him to do more physical therapy with his neck. Unfortunately, there is no access to draw blood so the poor little guy will have to have lots of heelsticks. It breaks our hearts, but he is so brave. His abdomen was distended, but they are hoping when he starts eating, he will resolve that on his own. He continues to be off a lot of medication and no longer gets Lasix, dopamine, nitric oxide, versed, and only one dose of hydrocortisone for his blood pressure and perfusion. He has fentanyl for pain and TPN/lipids for nutrition until he gets to eating better.

Liz said two of the anesthesiologists came down to get him for surgery, who had also been with him in his first surgery to remove the mass. They both were so touched by Carson, they each asked for pictures. We thought that was really precious and another way God is using Carson in this world. Carson was also held for the first time today. One of the nurses held him while ENT doctors looked at his trachea. They have refitted it and hopefully, it will not have any leaks. Liz and Preston saw him being held and were so happy. He did very well and actually his heartrate came down. It was really sweet. Liz and Preston have also discovered he really likes to have his head rubbed. What a sweet angel straight from Jesus! Gosh, my heart is just overflowing with love.

Kellen is doing great. He is up to 40 mL on his feeds. He continues to do well on some feeds taking it from a bottle, but then other feeds loses his energy and needs some assistance. We are just thankful he is doing as well as he is. Again, he is on no medications and gaining weight like a champ. Kellen weighs 4 lbs 6 oz and Carson weighs 4 lbs 12 oz.

For those who want specific prayer requests:
1) God to heal Carson's throat and allow him to be able to swallow and protect his airway. We will not be able to test this until he is off his ventilator so we are praying for him to wean off his ventilator quickly at this point.

2) That Jesus will continue to hold Carson when he has to go through painful heel sticks for blood work and physical therapy to move his neck. For Jesus to hold him in his arms, until his loving family gets the chance to hold him.

3) Carson does have some blood in his urine, prayer for healing of his tissues

4) Continued praises for all the miracles and ways Carson and Kellen have touched so many lives

With love to all,

Sarah