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

We are back and ready for Christmas!

Well, we are back home...once again, sorry its taken awhile to get an update done. I'm sure many can relate, getting back from a trip & your house becomes a whirlwind, plus throw in Christmas prep & it's a real tornado!!

Carson had the sleep study done on Sunday evening...we were so proud of him!! He was not a fan of the 100 probes (maybe not 100 but it was ALOT) placed on his head, chest, & legs, the straps & probes. But he did well getting them all on (it took almost an hour just to get ALL of them in place)! And although he got teary eyed a couple times, he stayed as relaxed as possible and went to sleep in a relatively short amount of time. Let me tell you, I have no idea how they expect you 'to sleep like at home' when you feel strapped down to the bed & machines. He especially hated the nasal cannula sensor in his nose! Preston stayed with him over night and he said Carson did pretty good but that the sleep tech uncapped him in the early morning hours. We didn't get full results until Tuesday. Carson had about a dozen partial obstructive events while he was capped. His index number given (from results) was 2 (normal is 1.5 or less). I think alot of it is positional...they uncapped him because he seemed to be working a little too hard to get adequate breaths. But all in all, the doctors were fine with the results & didn't see anything that was a game changer.

Wednesday morning, he had a scope with the pulmonologist and ENT.  They saw basically the same thing as last time but they spent more time looking and discussing. The areas of narrowing/obstruction are above his vocal cords (the area of reconstruction looks great!). I was hoping they would do any intervention needed while he was out this time but they want us to schedule the next surgery in the next couple months. There are two areas that they want to work on...one area is just above the vocal cords and they want to suture this tissue back and the other area is tissue just above his epiglottis that they will remove with a laser.

While, I wish we didn't have any more surgeries....all of this info is consistent with the sleep study and what we see during the day with noisy breathing during normal activity. However, like the doctor stated, 'this is nothing that you would find in a textbook.' 'We are making our best educated guesses.' It shouldn't surprise me that Carson is so unique but it shows HOW unique his airway is when you hear this from a doctor who has been doing reconstructions for 30-40 years & sees patients from all over the world. As a couple friends said 'Carson is blazing the trail and opening the path to healing for others as well.'

As it often happens, we get through all of Carson's appointments & surgeries and as we head back home, Carson is usually asleep in the car (sleeping off anesthesia) and I dissolve in tears. We stay strong and are so thankful for being at Cincinnati Children's with the immense experience that their team brings but golly, I wish Carson could just have a break from all of it. As I look at his sweet face in the car, that resting face of an angel...my momma heart breaks. So we take it one surgery at a time & I try to keep my wishful timeline out of my head (the one that gets his trach out before school starts & before summer). Because all I really need to do is stay in the moment that we are in. Carson will be fine, trach or no trach, as he shows us time and time again. I sometimes wish that we could have an in depth conversation about how he deals with the pain & suffering and that he could tell me, he understands why we are doing it all and he is fine. Ha!...what am I thinking...ONE, no male in my family is much of a talker and TWO, while Carson doesn't TELL me he understands and that he is okay, he SHOWS me in his actions and how he may cry and get mad in the moment but then he is over it and on to the next 'normal' 5 year old activity.

Thank you so incredibly much for the prayers that sustain us in the long, tiring hours of hospital trips! We hope you all have a very merry Christmas...Carson and Kellen are SUPER pumped!

An indoor playground...such a life saver on the COLD days!

Festival of Lights at the Zoo

Holy Moly...we are headed back to Cincinnati

Holy moly...its been over two months! We. are. still. alive. And we are headed back to Cincinnati tomorrow for the next round of procedures & tests. It's been quite the past week and a half. But before I tell that story...why are we going to Cincinnati?

Sunday night, Carson will have a sleep study in the hospital while his trach is capped. Prayers that he can actually get a good night's rest with the 100 stickers, wires, straps, etc. they put on you for a sleep study.
Tuesday afternoon, he has a clinic appointment with the pulmonologist. Praying that the sleep study results are in by the appointment so we can discuss them and that we get some good answers to several questions we have about the stridor and the apparent increased work of breathing that normal play/running activities cause Carson (not that it slows him down but I want him to have energy for other things as well)
Wednesday morning (9:30 am ET) Rigid and flexible bronchoscopy with ENT & pulmonology to take a look at his airway and I'm praying they will do any intervention that is necessary, if any is indicated by the sleep study or the appt. (if it is needed)
Then return home for CHRISTMAS!! That's the plan but it has been known to change ; )

Speaking of change...last week I got a message from Cincinnati telling me I needed to call to reschedule ALL of Carson's appointments/surgeries because his insurance's enrollment with the hospital as whole had expired and the necessary paperwork would take 30-45 days. So I calmly...ha, my blood pressure went through the roof (I'm sure) when I got the message. I took a few breaths and called them back to ask what in the world was going on? : ) We've had these appointments for over two months, how are you just now catching this?!? Anyways, not only did Cincinnati Children's agree to try to get the necessary paperwork expedited (as it was their mistake) but we also contacted our Missouri representative to see if they could help. Well, there was a big lesson in this for me...as the election is still somewhat fresh and I'd been reminded of my general dislike for politicians. Who would it be that helped us out, allowing us to continue with our planned appointments?? None other than a politician!! Good reminder...there are so many good people out there...politicians, police officers, neighbors, etc. There is a lot of good in this world so don't let the bad ruin it! AND...prayer does mighty things! When I called Cincinnati two days ago to make sure it was a 'go' on their end also, the lady I was speaking to (who doesn't know me) said "You are very lucky. It was like everyone was on Team Carson Clark!" {But of course, I thought} She only made one call and from there everyone was working to get the insurance stuff figured out and keep Carson's appointments the same : )

In other news...Carson and Kellen are now FIVE!! Where have the years gone?!? They had a wonderful birthday and have really enjoyed the Christmas season so far. They are pumped for Santa!
Thank you all for the many prayers and thoughts you've sent our way...we've seen mighty miracles and hope that this may be the year we get rid of the trach! I will try to update from Cincinnati...we are staying at the Ronald McDonald House and the boys have been looking forward to it for the past several weeks. It's going to be COLD so we will get to take full advantage of all they enjoy about the RMH (inside).

5th birthday party fun {at the expense of Poppy & PaPa}

Our big five year olds!

Those. Smiles.

My heart melts.

And our love continues to grow.

This was from pictures we had taken at Mom & Dad's

They were done with pictures by this point : )