Carson went down to 10 on his ventilator setting. He is doing fantastic!!! He also gained weight last night...about 5 ounces in one day...so he either had a slice of Preston's birthday cake and ice cream when no one was watching or he has a little extra fluid. :) He is over 9 lbs though so we are happy. They are going to be watching though because we don't want excess fluid. This Friday we should get a liver and kidney ultrasound to follow up on his clot in the liver and calcium in his urine.

Hope everyone is having a great start to your week!

Posted by Sarah

Happy Birthday Preston!

Happy birthday to you! Happy birthday to you! Happy birthday dear Preston, happy birthday to you! 

And many more and we love you on channel two with Scooby Doo!!! 

Today was Preston's first birthday with his two boys. It was a wonderful celebration with all of Preston's family and Liz's family and Grams. We were just missing a few people, but we were all there in spirit. We got to spend time with Preston and eat an unbelievably amazing cake Elizabeth made. WOW, she is a fantastic cook (following in our mom's wonderful footsteps)! 

Carson had a great day as well. His ventilator is weaned down to 11 on his PEEP plus. He started at 18, so we are certainly making progress. We are just keeping up the prayers for healing for his lungs. He got his 2-month immunizations yesterday, so he was pretty sleepy today. He looked just like an angel. 

Kellen decided not to be outdone by his brother and may get to have a surgery in a couple weeks. Preston and Liz have found what we believe to be a small hernia. It shouldn't be anything serious, but Dr. Yang is considering repairing it while Liz and Preston are in St. Louis. They will see him in the next week with Kellen and talk about options. This may be Kellen scheming to see his brother as he would have to stay in the hospital overnight if he has it repaired. :)  

All in all, a truly blessed day! We are so thankful!

Posted by Sarah

sleepy Carson

Carson & Daddy

Kellen ready to box that hernia..with a strong right hook

Happy Birthday Daddy!

down to 12...

Short update today.  Carson is down to 12 on his ventilator.  The goal is to wean one a day on the vent as long as he does well.

Hope everyone is having a great holiday weekend!

very good...very good indeed

Excellent news. Carson had a great blood gas this morning! The doctors were very happy and they weaned two on his ventilator. He is at a PEEP plus of 13 (he started at 18). We are so proud of Carson and thankful for the answered prayers thus far. The plan is to wean his PEEP plus to very low numbers, then take his rate even lower (it is at 12 right now). Eventually, the doctors will make a decision about trialing CPAP or doing something called "sprint" where they use a trach collar for increasing times each day. For right now, we are just thankful. 

He is still having some bleeding from the area his Broviac was taken out of. They are keeping a pressure dressing on the area and will check it again on Monday. And on January 20th, we should get another ultrasound of Carson's liver. 

Kellen had a fantastic day with Nana Bunch. 

It is Preston's birthday weekend too! Liz and Preston are getting to spend a night on the town and we are praying it is a wonderful time away from the daily challenges they have faced. 

Hope you all are doing well and being blessed greatly for your faithful prayers and support.

Posted by Sarah

update from Uncle James

Today was a pretty good day.

Carson had his broviac taken out (an iv in his leg), once they remove the broviac he started bleeding from it due to the lovenox so on several occasions they had to hold pressure on it. At this point it appears the bleeding has stopped. On a positive note, his G-tube has stopped leaking.

Kellen is continuing to doing well.

Posted by James

lots of praises!

YEAH!!! Carson got to wean today!!! They went down to 15 on his PEEP Plus settings on the inspiratory pressure. That is the setting that he gets when he breaths.

Poor little guy is having all sorts of fits with his G-tube. After it overflowed yesterday, they just put him back to the G-tube and took away the button because it was leaking. Today, it was still leaking, so they had to put a stick in next to it to keep it from leaking.

They plan to take out his Broviac tomorrow which is another IV into his artery. His liver enzymes are almost back to normal which is an excellent sign. His AFP (one of the tumor markers) is also continuing to drop.

All in all a good day!! Hopefully, the blood gases will continue to be good.

January 10

Well, poor little Carson had to deal with less than adequate amounts of milk the past 24 hours... they swithced to a G-button (a lower profile access) yesterday but since that time milk had been leaking (well gushing at times) with every feeding. Today, they made the decision to switch back to a G-tube until he gets a little bigger and the site heals better. Otherwise, no other changes were made today. Hopefully tomorrow we can begin the weaning process again after a blood gas is drawn. Big news for me (and a sigh of relief), I changed out his tracheostomy tube today without any hiccups or feeling like I was going to pass out and also gave him a Lovenox injection (as we will likely be on this for up to 6 months). Preston and I are sure learning alot through all of this!

Kellen continues to do well, he was pretty sleepy today which I would guess is due to his 'not so fun shots' yesterday and the Tylenol he had after a low-grade fever last night. Everyone be praying he isn't up ALL night : )