the amazing adventures of carson and kellen: Spring is Here!

Thursday, March 31, 2016

Spring is Here!

I've meant to hop on here so many times to give little updates and it always seems that time runs out or I'm just too exhausted by the end of the day. The boys have been enjoying these warmer days...SUNSHINE is just wonderful! I really think it is the best medicine (along with all the laughter that usually accompanies being outside)! Carson and Kellen have become quite the masters of their scooters and bikes...sometimes to the point that I just can't watch because I envision all the broken bones and busted mouths that could happen at any moment. But they are boys through and through...whether it's the constant wrestling, playing in the mud, finding rocks, or being crazy kids on their various wheeled toys : ) Over the past few months, our normal routine has been interspersed with a couple visits from friends, trips to see Ellie & John (Sarah's newest child), holidays, and fun with family & friends ALONG with a few reminders of how God has truly worked miracles in our life.

1. A little while ago, one of my good friends called to see what I found most beneficial while the boys were in the NICU (she was wondering because she had a friend who just had a premie and was going to be in the NICU for awhile)...as I was contemplating those first few months & what helped us, I was overwhelmed with GRATITUDE for Preston, our family, and ALL of you who journeyed with us, finding ways to help or just covering us in prayer! Because HUMAN BEINGS were at the top of my list and the support you all provided. Of course my faith in Jesus was up there too (which has grown exponentially since that time - simply because it was that or sink). God worked through all of you...you were his hands & feet & heart. I think back on that time in the hospital when stress should have been through the roof & I just remember so much PEACE! Now, THAT can only be explained through the peace only God can give.

and

2. Earlier this month, Carson had a couple routine follow ups with doctors in STL (endocrinology and gastroenterology)...so we made the trip to Cardinal Glennon. After four years, the site of that hospital still brings a flood of memories & emotions but also HOPE! Carson made it through his appointments with flying colors (with many comments on how well he is doing) and then we headed to see one of Carson & Kellen's primary nurses (from their NICU days) that happened to be working that day...on the way to see her, we just so happened to see two of the main surgeons in the hallway that helped deliver the boys & remove the teratoma. God wanted us to see these two surgeons, I'm sure...after FOUR years, they still remember Carson (& Kellen) and so many details of his case. These doctors haven't even seen Carson in probably two years or more, and even though they have had probably thousands of patients since then, they still remember Carson...WHY?!? Because he had a freakin' HUGE teratoma...but also because his case could have gone totally different..because his case is miraculous! In fact, one of them even said, "I don't think you all really understand how close we were to losing Carson"..."kids don't do that well on ECMO coming out of surgery"..."you don't want to put kids on ECMO right after surgery because of the bleed out risk." God is alive, he is SO alive in this world, if we only have eyes to see, ears to hear, and hearts to believe. I'm so thankful that Carson's story wasn't and isn't over...the suffering is hard but we have him here with us! We will persevere...

And we will one day go back to Cardinal Glennon trach & g-button free (God willing)!!

With Ms. Christi...one of our favorites still!

We did get Carson's next cluster of surgeries scheduled in Cincinnati...he will be having a bronchoscopy May 4th to double check that nothing has changed in his airway and then assuming it hasn't, May 6th will be another BIG reconstruction! The plan is to move his trach site down some and then reconstruct the area at the level of his current trach. This MAY involve another rib graft {Ouch!} and will definitely require another stent to be placed inside his airway to allow healing for ~10 days. The stent will then be removed May 16th. Carson will need to be in the hospital for close to a week after the May 6th reconstruction. We pray every night for healing of Carson's airway but also for guidance for the doctors' thought processes and skilled hands. The surgery procedure is so far over my head (partially because I don't WANT to know what is going to be done to Carson) that I really just pray for the doctors to make the best decisions and for the many details that I can't even name.

Update on Carson's feeding: Carson only lost a 1/2 pound but has been maintaining his weight since January, even with the new changes of allowing him more control over the amount of food he eats by mouth. I have my okay days, my better days, and plain awful meals where I lose my patient calm {on the outside} self...but all in all, I think it has been good for all of us. Carson is eating a lot more and a bigger variety of table foods. I believe simply because he actually feels hunger at times (even if he doesn't know it)! Through these past couple months, Preston and I both agree that the next step would be to cut out his tube feeding completely because we still aren't sure he fully grasps the connection between eating, satiety, and hunger...AND how could he?!? Nothing is normal about being tube fed your entire life, he has never known any different. We WOULD continue on with this step but with surgery being about a month away, we will shift gears a bit to make sure Carson's nutrition is at its optimal level going into another big surgery.

Again, thank you for all your prayers & love!! I don't think I'll ever be able to put into the words the gratitude we feel.