On the road again...

We head back to Cincinnati tomorrow for another scope on Friday. It is scheduled for 8 AM (ET). We appreciate the prayers...the hope was that after this scope they would let us start capping his trach (which is one of the last steps before taking it out altogether). But how is it that as that glimmer at the end of the tunnel just barely starts peaking, you feel like you are put in slow motion, you become a bit more impatient, and any little set back feels a bit bigger. This past Friday, I finally put a name on a symptom of Carson's...STRIDOR...noisy breathing...something that you don't want to hear...meaning that there is something narrowing his upper airway, whether it is collapse of the airway, tissue blocking it, or something else. Although, Carson didn't & doesn't seem phased by it and doesn't seem to be in any sort of distress, I know it is not a good sign. I talked to the doctors last week in Cincinnati and they didn't feel like anything needed to be done early but of course were concerned about the whys?? also. So after about a day of being really disheartened, a bit anxious trying to stop all the worst case scenarios from playing through my head, and a whole lot of soul searching/praying...I got back up and realized, this isn't the end of the world. Carson is fine, he is still living each day to the fullest, he is carefree, and God's got this. I feel much more at peace although my hope is dimmed for this scope to be full of good news...I am praying for some answers as to what/why he has stridor and what can be done about it. Thank you all for journeying with us and carrying us in your prayers.

Those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint. 

Isaiah 40:31

Do not be afraid. Stand firm and you will see the deliverance the Lord will bring you today...The Lord will fight for you; you need only to be still.

Exodus 14:13-14

Home again. For now.

We are back home and back to our normal activities for now but we will kick off September with another trip to Cincinnati. Monday's scope went fine...but wasn't the best case scenario. All in all, just another bump in the road. His airway still looked okay except for the granulation tissue in a couple spots that had grown since the t tube was removed. In one area, the granulation tissue had grown from the front and back wall of his airway, meeting in the middle. This had to be removed and the airway was dilated. Overall, the airway is still staying open sufficiently, as long as no more granulation tissue invades. They wanted to take another look to double check. So another scope is scheduled for Sept 2nd. This was a prime example why they do these repeat scopes. Granulation tissue is not hard to take care of...a bit bloody but not difficult, but if you don't catch it quickly it can become a thicker, harder to manage, scar band.

One step at a time, staying focused on the positives, and thankful that Cincinnati is only a car drive away (although, I'll be ready to stay home for awhile or take trips purely for fun). Carson and Kellen have been troopers through it all. Kellen loves to come support his brother and to take in the playground and craft room at the Ronald McDonald House despite the long drive. Just a quick plug for Ronald McDonald Houses (Cincinnati or elsewhere)...they are truely a gift, a REALLY bright spot in what otherwise would be a gloomy trip (for the whole family)! This one has given the boys something to look forward to and not only that but it gives us a chance to meet other families, whether it is a shared story, offering or receiving encouragement, or just seeing other kids with trachs (because let's face it...we feel a bit isolated in the small town USA when it comes to trachs). But at the RMH no one looks twice (unless its to say, "Hey you have a trach too!") and Carson doesn't have to answer those "What's that?" question a hundred times. So when you see those collection boxes for change or soda tabs...they do benefit a REALLY GREAT place!

P.S. Don't get me wrong, questions are great, in fact, they are welcomed but I know it is a relief for Carson to just feel like one of the kids also.

Walking across the Ohio River. A huge perk now...we can stop by and see Uncle Josh in Louisville!!

Oh, Ronald!

My hero...ready for surgery!

Home sweet home! Smiles and energy abound even though this is the evening after surgery.

'Cautiously Optimistic' ~ Dr. Cotton

We will take it...after last Mondays surgery, Dr. Cotton said he was pleased with what he saw and 'cautiously optimistic' about Carson's airway. This coming Monday (Aug 22) will give us more information and hopefully make Dr. Cotton straight up OPTIMISTIC! That's at least what we are praying for, I believe this past week will have been sufficient time to tell the doctors if Carson's upper airway will remain open (without the T tube in place) or if there will be a need for future surgeries.

Carson did well with the surgery last week. We were so excited to hear his voice and it is back! It took a while (~12 hours before we heard anything and a couple days for the full effect) for his voice to 'wake up.' Which caused a bit of anxiety/fear for me, all the while I was telling myself, "Be patient." "Trust in God's plan." "Do not fear." But the wait is KILLER! There have been times this week that Preston and I will just sit and listen to him talk {talk to us. to Kellen. to himself.} Kellen has been so excited also! Occasionally sharing in (friendly) yelling matches with Carson...just because...just to see how loud Carson is now. Music to my ears?!? Haha!

Anyways, thank you for the many many prayers and positive thoughts! We head back to Cincinnati tomorrow and his surgery is scheduled for 7:30 am ET Monday. Should be a quick procedure and back on the road home (hopefully with GREAT news!)

POURING down rain. 6 AM. BROKEN umbrella. Didn't stop the smiles. Carson thought it was awesome that we had to walk over in a storm. Maybe it won't rain this time though because we threw our umbrella in the trash.

It's time...

Alright. Carson did it. Three months done.

We head to Cincinnati tomorrow and Carson will have the t tube removed Monday morning. Surgery is scheduled for 7:30 am ET. It should be a short procedure. The plan is for a trach to be put back in. They will get a look at the surgical area from last May on Monday but I think the true test and the most accurate picture of the success of the reconstruction won't be until the following Monday's procedure (Aug 22). The plan is for Carson to stay in the hospital (at least) overnight for observation.

I never look forward to surgeries but this is one of those that I'm more excited about. It means that I will be able to hear Carson's voice again. I'm sure there are many times we all wish we could cut the noise level of our kiddos in half, but it is unreal how much you can miss their voice. Three months seems like forever ago. Thank goodness for videos...I've played certain ones (from before the reconstruction) over and over just to hear that sweet voice. We are excited and praying and hoping for good news! Thank you for joining with us to cover Carson, the doctors, & nurses in prayer!

He will yet fill your mouth with laughter & your lips with shouts of joy. Job 8:21