Wanted: Answers & Patience

I've been wanting to get on here (now that we are 4 weeks out from surgery) and be able to say that we see huge improvements in the stridor (noisy breathing) and feel very positive about the success of this last surgery...instead, I don't really even know what to write. Something is off, yet I don't know what it is...when I don't have my NORMAL to compare to, it puts me at a loss. And I'm that person that can't stand unanswered questions...answers I'm not really sure anyone can give me right now.

What I do know...Carson has lost his voice in the last week (first time he has ever lost his voice in 5 years)...just in time for Kindergarten screening tomorrow...great! Ha!  When he has his cap on, you can hear each breath (on inhale & exhale)...it's different than the stridor on exertion before this surgery but it is audible when you are next to him and it becomes more pronounced with exertion, whether he is just dry or there is an obstruction. I have no idea! And he does have extra secretions right now (whether its allergies or a virus...I'm not sure, but its that time of the year for either).

I called Cincinnati this morning...hoping for some answers as to why he lost his voice or what the breathy sound could be or hoping for some ideas of what to expect but didn't get any that satisfied me. I'm waffling between further advocating for my child and wanting answers NOW and trying to be patient and wait for a new normal to be established. Carson is such a trooper and in some ways, it makes it hard for me because he will push through a lot of pain, discomfort, or just different feelings because he always has! Yet, I wish he could just tell me is it hard/harder to breathe with the cap on...he likes wearing his cap but I don't want him to if it makes it harder for him to breathe.

What I hate is that these differences and concerns are making me more impatient and short in general...so then every little misbehavior, inconvenience seems a much bigger deal. Blah, Blah, Blah...I'm not sure any of this makes sense and I don't know if it should because all these feelings and noticing little differences come from having Carson for 5 years,  knowing a whole lot more about trachs than I ever thought I would and knowing Carson's normal only to have it changed on a regular basis recently with surgeries, adjustments, etc.

I guess I'm just asking for prayer for complete healing for Carson but also for guidance and intuition for Preston and I as we navigate the next steps in Carson's journey...when to push and when to be patient.

I just heard a song by Tenth Ave North that hit home for me..."I Have This Hope"

As I walk this great unknown

Questions come and questions go

Was there purpose for the pain?

Did I cry these tears in vain?

I don't want to live in fear

I want to trust that You are near

Trust Your grace can be seen

In both triumph and tragedy

I have this hope

In the depth of my soul

In the flood or the fire

You're with me and You won't let go

But sometimes my faith feels thin

Like the night will never end

Will You catch every tear

Or will You just leave me here?

But I have this hope

In the depth of my soul

In the flood or the fire

You're with me and You won't let go

P.S. Just so you know, these changes haven't slowed Carson down much (although not having his voice can be frustrating at times)...they've had a blast riding their scooters, way too fast, all over the place. We've loved the nicer days recently!

We are home & Carson is back at it!

Surgery went well and we actually got to come back home last Friday. It was a long few days but was so nice (as always) to be back home. While Carson is still healing and there is some swelling...he is back to acting like his normal, happy, active self! Thank you for the many, many prayers!

So, on the surgery...the doctors felt confident in the surgery and said they were able to do all that they were hoping but time will tell because there was a lot of swelling (to be expected). We will have to wait for the swelling to resolve before the true results are seen. Great news...no stent was needed! So Carson is able to talk and we won't have to make any follow up trips to have the stent removed, etc. Actually, we won't go back for three months (and actually the next date is already set, Cinco de Mayo). The plan...in three months, have another scope and trial capping (plugging his trach) day and night for 48 hours. If that goes well, cap day and night for a couple months and then decannulate in July/August!!! Only scheduling hiccup...the latest that our next baby will be here is May 22nd (17 days after that May 5th appointment). But...we know that God has everything already planned out, so leaving all the details in his capable hands.

Carson did well with the surgery, as he gets older, he seems to get a little more nervous but he handled it all pretty well. There was a fair amount of pain initially when he coughed or moved his head (they had to make an incision on the left side of his neck) but that seemed to improve after a day or two also. Carson is truly our hero....he takes the cards he's dealt in stride and just keeps on going!

One of the verses in Jesus Calling, the day of his surgery, is one of my favorites and is just so true regarding Carson. He does it without knowing it but by just being him.

Therefore, since we are surrounded by such a great cloud of witnesses, let us throw off everything that hinders and the sin that so easily entangles. And let us run with perseverance the race marked out for us, fixing our eyes on Jesus, the pioneer and perfecter of faith. For the joy set before him he endured the cross, scorning its shame, and sat down at the right hand of the throne of God.

Hebrew 12:1-2

This was one of his first smiles after surgery : ) Precious, precious boy (with his bunny he got in pre op)!

Thank you again for the many prayers that have been said and will be said for Carson and our family. There are many details in the coming months with [hopefully] the last of Carson's surgeries before his trach can come out, for timing of our next precious boy's birth, with Kindergarten summer school (May-June), and the beginning of Kindergarten in August but I'm so thankful for the many answered prayers already!

February 23rd is here

This is going to be a short post because I am still working on packing but we are heading to Cincinnati tomorrow (Wednesday) for surgery that is scheduled for Thursday...I think I'm still holding my breath that it is all going to go through. Surgery is scheduled to begin at 7:30 am ET & they have the OR blocked for 4 hours for his case.

This is the plan for the surgery (from a prior post):
They will be doing a supraglottalplasty (basically removing tissue by his epiglottis), a vocal cord lateralization (actually its the false cord just above the vocal cord) and they may need to place a stent for a couple weeks to help his airway heal & remain open. The stent is a pain because Carson is not able to talk while it is in place and eating is much more difficult. It will require at least an overnight stay (maybe 2) but should not be anywhere near as invasive as his reconstructive surgeries.

So the little hiccup this time (hopefully not but maybe)...we noticed that the area right around Carson's trach stoma (opening around his trach) was more red, puffy, & tender on one side. What?!? He never has a problem with his stoma & this happens 3 days before surgery. I called & sent pictures this morning and they thought we could just wait until we got there & they would address it. Tonight (Tuesday night) it was even more red/puffy. I'll probably touch base with them again in the morning but either way we will want them to look at it just really praying that it doesn't affect the planned surgery. We want to get it done!

One praise...we were NOT going to have the Ronald McDonald House Wednesday night but I got a call today saying there was a cancellation and we could now check in tomorrow (Wednesday). The boys are pumped!! They were running around tonight cheering, "We are going to Cincinnati tomorrow!" "We get to go to the Ronald McDonald House!" Love them and love RMH!!

Thank you again for the many many prayers & thoughts! Hopefully I will be able to update that we did make it and they did go forward with the planned surgery AND that it was a SUCCESS!

Lots of love to all!

Rescheduled for February 23rd & RSV

Well, we have been the sick household for the past week and a half. Carson had a high fever for 4 days and now we are into occasional fevers, cough, and a nose that won't quit running. It is/was RSV...there were a few nights/days that I was pretty concerned and wondering if we needed to head to the hospital. But thankfully, we were able to battle it from home (with assistance of supplemental oxygen a couple nights). I am SO SO very thankful that Carson didn't catch this nasty virus when he was younger and I am so glad it reared its ugly head prior to surgery because it would have been awful trying to recover from surgery while fighting RSV.

Kellen was fine until this past Thursday when he started in with a cough and fever. Thankfully, his has been more mild. Temperatures are not quite so high so he has been able to carry on in a pretty normal fashion. And as of now, Preston and I have stayed healthy. But ugh, all I see is now how the flu is starting to become more prevalent.

Let me just tell you, if we happen to get the flu...I will be in a corner, crying! This past week and a half has been hard enough...staying at home, worrying about sick kids, taking care of sick kids, etc.

We did get the surgery rescheduled...it is now set for February 23rd. Let's just pray that Carson has recovered from RSV by then and does not become host to any new germs before then!

Cancel that...

We are disappointed but we had to cancel the surgery. We are still in Dexter. Carson spiked a fever in the middle of the night (Saturday night) and still had the fever this morning. I called Cincinnati and they agreed...we should cancel.

It's disappointing...Preston has to schedule his work (which is so busy right now) around these surgeries and when you cancel, it usually takes a month or more to get back in so as we approach Kindergarten we only have so many months left to get these surgeries in & the trach OUT! Then add in our new little one on the way and time feels to close in on us & I get too caught up in me trying to plan life...
BUT with that said, I always pray for guidance on these trips & clear signs if we are not supposed to go. I think I got my clear sign and we are SO thankful that we didn't get up there and THEN this happen leading to a VERY long car ride home. I was even able to catch Mom before she left Rogersville. So I'm grateful for my CLEAR sign but now that I have it...the fever can go away ; )

Thank you again for all your prayers...I know God is in this and that His timing is always good.

There is a time for everything, and a season for every activity under the heavens. Ecclesiastes 3:1

But 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

Heading to Cincinnati

We will be leaving for Cincinnati again Sunday morning for Carson's surgery scheduled on Monday (7:30 am ET).  I feel like we've been to Cincinnati so much recently and at times, I just wish we could stop and just live life but we are ready to get this next surgery done. And Carson makes it so easy for us, he doesn't complain or act anxious going into these trips. In fact, Preston was talking to the boys this morning about why we were going to Cincinnati, explaining the surgery, etc. And then he asked Carson, do you want to get the surgery done and over with? Carson's response, "Yep!" and then "You think I can get a craft from Ronald McDonald to do once I'm feeling a little better after surgery?" I tear up just typing this. Where does this child get so much strength and an attitude that blows me away?!? Thank you, God! He has his moments when he gets nervous & doesn't want to once we get to pre-op but even then it is remarkable! And Kellen and Nana will join us as we travel just to give Carson all the comforts possible. So thankful that Nana and Kellen are such troopers, also.

They will be doing a supraglottalplasty (basically removing tissue by his epiglottis), a vocal cord lateralization (actually its the false cord just above the vocal cord) and they may need to place a stent for a couple weeks to help his airway heal & remain open. The stent is a pain because Carson is not able to talk while it is in place and eating is much more difficult. It will require at least an overnight stay (maybe 2) but should not be anywhere near as invasive as his reconstructive surgeries. The surgery is scheduled for 4 hours long. Praying for safety while we are away from him and divine guidance over the surgeon's minds and hands!

Thank you again for the many prayers that go up for Carson & our family. Carson is such a trooper but I continue to pray for protection over him for not only the surgery itself, but his mental and emotional health also, as he goes through yet another surgery.

Our next adventure...

Hoping everyone had as wonderful a holiday season as we did! We were blessed with lots of time with family & friends! And now on to announce our next adventure....

Carson and Kellen will be big brothers to another little.... BOY!!!!

Just a little excited!

We (all of us) are over the moon excited and feel so incredibly blessed! Already, I feel like this pregnancy holds a little more significance and awe for me...we've known miscarriages, we've known bad news at ultrasounds (more times than I can count), we know there are no promises that this one will be healthy or an easy journey but the fact that we have the chance to bring another life into this world...is a blessing. We know that no matter what happens, we will survive with God's (and our huge support system's) help and that every life touches & changes our lives forever! I think my heart warms & grows a little EVERY time I feel this little one move inside me.

Your eyes saw my unformed body; all the days ordained for me were written in your book before one of them came to be. Psalm 139:16

We are praying for a healthy baby & pregnancy. We will be seeing my high risk OB (Dr. Vlastos) next month to get a little more clarification on method and timing of delivery. There is some clarification needed due to the way the boys had to be delivered & a chance we may have to deliver early with this one. I do know that this one will have to be a c-section and I can NOT go into labor. So lots of details to pray for...and a lot that can only be left in God's hands. And while that is SO EASY to say, it is much harder to always take to heart. We are due in June...so almost halfway there!

It's BLUE!

We had a lot of fun with the reveal. We used a balloon filled with confetti. None of us knew prior to popping the balloon whether it was a girl or boy. However, we were all shocked to see blue because I was certain this one was a girl. (This pregnancy has been so different from the boys') Both Carson and Kellen were rooting for a girl also but they are just as excited now for a brother! Add another boy and leave me even more outnumbered : )

And next up, we are scheduled to go to Cincinnati for Carson's surgery January 30th. I'm praying we can stay healthy (RSV, the flu, and strep are going around). They will be doing a supraglottalplasty (basically removing tissue/opening up Carson's airway ABOVE his voicebox). It will require at least an overnight stay but should not be anywhere near as invasive as his reconstructive surgeries. Thank you for the many prayers that go up for Carson. He is such a trooper but I continue to pray for protection over him for not only the surgery itself, but his mental and emotional health also, as he goes through yet another surgery.

The LORD himself goes before you and will be with you; he will never leave you nor forsake you. Do not be afraid; do not be discouraged." Deuteronomy 31:8