the amazing adventures of carson and kellen: Update from HOME!

Sunday, March 17, 2013

Update from HOME!

I am SO sorry that it has taken me so long to get back on here...things were just more hectic than I imagined but I am sorry because I know how hard it is to wait for an update. Thank you for ALL the prayers...like Sarah updated on Friday, Carson did well with the surgeries and the surgeons said they were able to accomplish what they had hoped and planned. We will find out results from the biopsy within the next couple weeks. Carson did well in the hospital but you could tell that he wasn't himself...the first 24 hours, were a bit rough. Carson was either asleep or wanting to be held by me. I didn't really know what to expect...this was the first more invasive surgery when we knew there would be some pain involved. The slightest noise, look, or just about anything would make Carson cry. Even Mimi & Papa couldn't get him to smile at times (which isn't normal). We were discharged on Friday afternoon after Carson was fed and made it home late that evening. We were extremely glad to be home!

Carson kept the majority of feedings down on Friday but then puked at least once after EVERY single feeding on Saturday. I didn't get too worried until Saturday evening when we measured the amount he puked up. He puked up MORE than we had just fed him. SOOO...we knew his belly wasn't emptying and we became slightly concerned about a possible ileus (bowel obstruction after surgery) and dehydration. After consulting with our in-family medical team : ) we decided to use a syringe before his night feedings to draw out any food left in his belly and start fresh with Pedialyte. At this point, I was thinking we were going to have to go up to Cardinal Glennon today to have an IV placed for fluids. We tried two feedings of pedialyte through the night (early Sunday). Carson kept both feedings down and then, this morning, he had his first bowel movement since surgery! Hallelujah...never so glad for POOP!!! Haha...I felt like we were back in our NICU days : ) Anyways, today was much better, Carson was happier and he kept all his feedings done...partly this is because we continued to check the residual food left in his belly before feeding him each time (& we would discard some if there was still a significant amount).

We will see how the next several days go and take it one step at a time! It is SO nice to be home. Carson and Kellen were able to enjoy the nice day on Saturday (the puking didn't slow Carson down too much!) And they played SO well together today!! I'll post some pictures...gotta LOVE these sweet boys! We have noticed that Carson seems to be talking more and more clearly since having surgery. This is likely because his airway is a little more open.

Now, to what we found out about our future procedures. Like Sarah had said, we are still looking at 4-6 more surgeries. In the immediate future, we will be having Carson's tonsils and adenoids taken out (hopefully this can be done in St. Louis) in 6-8 weeks. And then after an additional 6-8 weeks (middle of summer), we will likely go back to Cincinnati to have Carson's epiglottis worked on. The epiglottis is the flap that covers the trachea whenever you swallow. Carson's is tightly curled and will need to be opened up. These surgeries need to be spaced out to allow proper healing. The surgeons said that if they try to do too much all at the same time, scarring can result and cause subsequent problems.

As always, we thank you for your continual prayers. And please continue to pray for...
1. Carson's recovery from this surgery and for his complete healing in God's timing.
2. That Carson is able to keep his feedings down as we progress back to his typical diet.
3. Guidance for Preston and I in ALL the details... to know when to take the next step next, when to ask more questions, where to have these upcoming procedures done, etc.
4. Everyone involved in Carson's care.

Friday afternoon...You could tell Carson was starting to feel better : ) His infectious smile! (You can kinda see the incision below his trach in this picture)