11/11 was HIS day…again

November 11th is always a day we celebrate because it’s the day Carson’s teratoma was removed and his chance at life became real. 11 years ago now! Also, officially when he got his trach. 

This year, 11/11 was HIS day again…Almost full circle  (closing up the stoma), the stars aligned (as the doctor said), prayers were answered that

1. The doctor agreed to squeeze in the stoma closure procedure during his follow up scopes even though there wasn’t technically OR time. And,
2. A bed was available. Hospitals are overloaded with sick kiddos right now so they've even had to cancel elective procedures but a bed happened to be open because another kiddo ended up not needing the stoma closure that was scheduled. So Carson got THAT bed! We had no idea that beds were so hard to come by but SO thankful it worked out!

If this hadn’t worked out, we would have had to wait until January to have his stoma closed (November 11th was the only day even slightly available). It already seems smaller, so praying it heals up quickly now!

Carson did great and I sometime will do a post just about the RMH but it seriously has made all the difference and helped Carson look FORWARD to going to Cincinnati!!!

Carson says his stoma is a little sore from the procedure but not awful! We will go back in 3 months for a follow up scope and a pulmonary appointment. So thankful to have this step done but still have a couple trips within the next year to make sure CPAP is doing it’s job and his airway is acclimating well to bring decannulated! So proud of Carson each and every trip!

Carson was pretty groggy & sleepy after the procedure

Puppet man...a craft was what got him going, otherwise I think he would have slept into the night

On our way out in the morning...never too early OR cold for ice cream!

ELEVEN & an update about decannulation

 NOVEMBER 8, 2022

Carson and Kellen are 11!!! We had a great day with them...it was beautiful weather, got to have a special breakfast, then after school and piano we spent about an hour playing on the high school football field, followed by a birthday dinner and dessert with the Clark side of the family. Just one of those slower evenings that are becoming more rare but one when it is easy to see and feel all the blessings and love!

We had a chance to reminisce with the boys about their birth and years past and you wonder how you are already here...with boys that are in the 5th grade, whose days are filled with school and often activities afterwards. With two boys who can keep up with or maybe even beat you in a 40-yd foot race! It's a heck of a ride and so thankful that I've got to go on it with these two! I know the days will only go faster and while I want to hang on to these times and slow everything down, I also know this is exactly where I want them to be. There were days that I dreamt of being able to go and play and just enjoy all things boy, that I would be cleaning out grass stains and mud out of Carson's clothes instead of vomit when it was so frequent! I continue to pray that these two find their passion in life, that they have friends and family that are close by to encourage them, that they always know God loves them, and that they know Him as friend and comforter!

This is 11!

I also wanted to get on here to do a better update from our October trip to Cincinnati and Carson's decannulation! He rocked it and we came home Thursday withOUT a trach, two days after he was decannulated and he went to school that Friday. Sooo many emotions but I think we all had just a little extra bounce in our step...it's been 11 years coming! Something we have prayed for, for ELEVEN years...something that we thought was going to happen at a year, then 5, then 8, then maybe not without the help of CPAP, then COVID happened.... With some really low lows and some high highs. The past 11 years have made me question so much of what I believe, given me a perspective that has totally changed my world, and has deepened my faith! It's been a journey and how do you put all those years & feelings into words?!?

I know I can't and yet I have had time to think and ponder and praise the Lord!! Now that its here and we are on this side, it is easy to find some blessings in Carson being 10 when he was decannulated. 

# 1: HE is excited! He gets it and understands what he gains by not having a trach (freedom in water). He is also able to understand some of the meaning and complexity of his journey!

# 2: As I think I've mentioned before, Carson was able to be part of the decision making process in terms of trading a trach for CPAP at night.

# 3: So many people came along side him and shared his {our} excitement...classmates and friends at school, people in the community & at church, family & friends, and all those that have prayed for him these past 11 years! It was heart warming to see and read all of the well wishes!

# 4: We were comfortable with the state of his airway and with CPAP (especially since we had CPAP for 6 months)

Many people commented about what a miracle it was that his trach was out. I agree, but honestly, I really feel like the miracle I saw was the fact Carson tolerates CPAP so well. I mean, he has NEVER pushed or thrown a fit about putting it on at night, not once. I would have put alot of money on it not being a smooth, easy transition and yet, it was! And although I can't say I love the machine (I still wish he didn't need it), the fact he's okay with it...makes it sooo much easier for me to accept!

Others have asked if it has changed his voice and while I think his voice is a little stronger, most of the volume of his voice has to do with only having one vocal cord (the nerve to the other vocal cord was severed during the surgery to remove the teratoma)...nothing to do with having a trach. 

Carson says he really doesn't notice anything different now that his trach is out except that he LOVES not having anything around his neck (the tie) and turtlenecks & some hoodies are much more comfortable!

It was a little bit of an odd feeling when what I had prayed for, for years, actually HAPPENED!! So, while we were all so excited to get the trach out, I also just felt a little bit 'lost'... I expected decannulation to be life changing when I used to dream and pray about it years ago and it really isn't...which is okay! We had figured out how to do life WITH a trach and that is a miracle! Life is good now and it was good with a trach! Honestly, the reason Carson was so excited to get his trach out, is that it means he'll be able to swim (once the stoma closes). And obviously that will give him more freedom and opportunities in water activities! I can not wait for the day we get to see him jump in water without a tube or something else to keep him above water!

All in all, things are going well! We actually head back for follow up scopes & a procedure this Friday.

Carson's stoma did close up a lot but it did not close completely. Hoping that the procedure this Friday will help encourage the healing process and it will close completely! It is a long story but let me just mention the miracle of this appointment coming up. There was some confusion or miscommunication about the next steps but when they initially scheduled this follow up on 11/11 (Friday) it didn't have the TCF closure (procedure to help encourage the stoma to heal) on the schedule. Once we finally got it added to the surgery and looked at the schedule, there was no more OR time on Friday to add the closure. With holidays, there then wasn't another time, until JANUARY, to get the scopes and procedure done at one time. We thought about cancelling it all and waiting until January but finally got a hold of the right people and the doctor agreed to squeeze in the TCF closure Friday. This means, we still have a chance of Carson's stoma being closed before we go to Hawaii in December! When they called me last Friday to tell me they would make it work...I just about started crying! I was so happy! And then on top of that, we will also have a room at the RMH because they had a cancellation! Things seem to be lining up perfectly, not to mention that 11/11 is a special day anyway. It was the day that they removed Carson's teratoma. Now, I'm just praying Carson stays well and we can make the trip and it all goes as planned!

Okay, that was ALOT...hopefully it made some sense! Thank you as always for everyone that has gone along on this journey with us and for all of the love and prayers that have carried us!

Checkout that tan line?!? I can't stop kissing it, much to Carson's dismay!

Homecoming 10.13.22

Lots of excitement in Dexter!

"The steadfast love of the Lord never ceases, His mercies never come to an end, they are new every morning, great is your faithfulness." Lamentations 3:22-23

Naked Neck 10.11.22

I’ll update more when I’m at a computer but Carson’s sleep study went well! He did great and we thought it went well too…then we just had to wait for the doctor to read it. They called us while we were at the zoo and said the sleep study with CPAP looked good and it was a GO for a decannulation trial! Cue all the emotions!!!

We came back to the hospital this evening and Carson took out his trach once he got an IV and the doctors came by! Anti climatic process but still so exciting!!

The plan is to stay here two nights and hopefully go home Thursday!! Thank you for carrying us along with your thoughts and prayers!

That October 10th date is already HERE!

 Carson, Preston, and I are headed to Cincinnati in the morning (Monday)! Carson is scheduled to have his sleep study with CPAP tomorrow (Monday) night. Of course, the summer flew by...I'm always grasping for more summer days with my boys, with schedules that aren't so full, and more time to just be and do all the things we choose to do! And not only has summer gone but the first quarter of 5th grade for Carson and Kellen is almost done too! Once the sleep study is completed, they are supposed to do an express read on it and then give us the next step. Decannulation is a possibility!! I am trying not to get my hopes up but I know they are! This is the closest we have felt to actually getting his trach out. 

Carson has done so well wearing CPAP every night! He has not complained one time, the machine readings look great, and he hasn't noticed any difference in how he feels. These are all good signs as far as we are aware! Prayers are appreciated for the drive up there, that the sleep study goes well, that we get a good sleep lab tech, and accurate results. And a huge prayer request always is for Carson's comfort and peace of mind through it all! We appreciate everyone's thoughts and prayers so very much!!

Kellen and Brody are staying in Dexter with Mom because of school, soccer games, and we just don't know what this trip is going to entail along with the fact that only two people are allowed in with the patient. We will miss them but glad they are able to stay too!

I will try to update along the way!

Puxico Homecoming...hang on, it's gonna be a ride!

Carson and Kellen have a new found love for skim boards!

First Day of 5th grade for Carson and Kellen!

Bring on summer : ) and some CPAP wear

I'm so thankful for Carson's attitude and I'm thankful that he's on board with CPAP. It truly is a blessing of his age...with him being older he can help us make this decision (trach vs. CPAP). 

I was able to talk with him shortly after we got the CPAP machine, after he had worn it several nights, and he said he would rather wear the CPAP every night and get his trach out vs not. I TRULY am thankful because his trach really only limits him in water activities. BUT...every year, that seems like a little more of a hindrance to him and for that...I will get on board the CPAP train too! : ) And while I have drug my feet and complained to God and had my moments of heartbreak as I help get his CPAP set up at night...Carson has not complained ONE TIME. He has asked questions so he understands it all but hasn't seemed to mind it at all (other than he doesn't prefer the nasal wisp mask...but even that he tolerated)! I love this kid and his brave, courageous heart : )

For the scopes...His airway was about the same and CPAP will hopefully be his ticket for decannulation. While I was hoping for a miracle and great news that his airway looks bigger...this news was what we expected. There is one level of narrowing that seems to be more from a lack of external support than really much they could do surgically. The supraglottic area just tends to collapse and this is a problem at night when your resting muscle tone is lower and everything tends to collapse a little more. But the surgeon didn't feel anything else is necessary because he is so functional with capping during the day and surgery doesn't guarantee anything. Preston and I both agree! 

While, I can let doubts creep in and wonder if some of the surgeries we've done were for naught. I can also rest in the fact we have always done what we thought was best at the time, we gave it a shot, and Carson's airway has come SO FAR since we first started going to Cincinnati. We started with multiple levels of stenosis (narrowing) and now it is just one. He was initially trach dependent and only had seconds before an emergency without his trach. Now, he has slept all night without his trach and been fine. And is at no risk of death even if he didn't have CPAP one night. It basically just boils down to moderate sleep apnea and he needs CPAP to provide adequate rest/sleep. I will continually turn back to these truths.  And, I believe we see God work most when all our other options have run out. So, I will continue to watch for how God may heal and see what he has to show us through the miracle of all that is Carson! 

Our immediate plan is to have another CPAP sleep study. Unfortunately, when I called a month ago to schedule this...their first available was October 10th. I asked if they could bump this up and they said they couldn't but told us that the waiting isn't completely wasted because they require a 3 month CPAP use trial before they decannulate anyway. So we will continue using CPAP. (We've had it a little over a month now but I wasn't leaving it on Carson all night because of school and end of year testing) So, now we will attempt to use it all night, each night until we are able to have the sleep study. I do have our name on a cancellation list and I'm calling weekly to check for cancellations (squeaky wheel idea...Ha!)...so maybe we will get in a little earlier.

Currently, our only issue seems to be pressure points and long lasting redness on the bridge of his nose from the CPAP mask. Otherwise, from everything we can tell...he is doing well. We shall see what the sleep study shows and as we use it all night, if Carson seems more tired or has anything else to report.

Again, as I said...I am so thankful for Carson's attitude (not to say that in the heat of the moments we don't see frustration) but at the end of the day, may we all be able to answer this question like Carson did.

"If you could be anyone in this world, who would you be?"

And his answer was, "Myself."

My prayers going into the summer and this next sleep study this fall...

1. That CPAP will be an option.

2. That his pressures don't have to be tweaked much. (If they do, we will have another 3 month trial period)

3. That we get the mask fit figured out and 

4. That the boys have a fun summer, full of all the things they love (& maybe get some stuff accomplished too!)

Sidenote: Carson did well with the induction process for anesthesia, as far as we know. Even though it didn't happen entirely like we thought it would. They have done away with induction rooms since COVID but we were able to walk back to the door of the OR but left him at that point. Our understanding was that if Carson chose to get an IV in preop, they would put him to sleep with an IV medication instead of hooking something to his trach. However, Carson said they still hooked something to his trach before using the IV. Frustrating to me but its hard to know what exactly happened since we weren't back there with him. I do have a call in to talk to someone about it. Thank you, thank you for the many thoughts and prayers that are sent our way! <3

The face of some happy kids...getting to stay at the RMH and picking a toy out of the toy closet!

Our first time at the newly expanded Ronald McDonald house...so we had to check out all of the new spaces!

Rooftop terrace at RMH

Just before he headed to the OR

All 10 of the Bunch side cousins together for the first time!

Last day of school pic (May have been taken a few days after the fact!)

Awards ceremony the day before we left!

Headed to Cincinnati

We are on our way to Cincinnati for a MLB & Flex scope tomorrow (Wednesday). Scopes are scheduled for 1:30 pm ET. While we don’t expect these scopes to really change or determine the next steps for Carson…it will give a current baseline. He hasn’t had scopes since March 2020. It doesn’t matter how many times we’ve done this, there are always some nerves for me but what has changed is how Carson handles it. As he’s gotten older, he’s chosen how he wants to be sedated (IV or inhaled gas). Went from sitting on my lap to be sedated to both of us on the bed, to him sitting in the bed alone. He’s a trooper. Being sedated is still the part that causes some nerves for him but we’ve talked about it and will see how it goes this time.

Will update more once we get home, but we do have the CPAP machine at home and we have been trying different masks! He has blown us away with how well he has acclimated to it!! I shouldn’t be surprised but he constantly amazes me!!

Thanks for the prayers!! Carson and Kellen are done with 4th grade and will be ready to really usher in Summer when we get home!!! Thank you for all the prayers!!

Quick update on CPAP

 A quick update on where we are with the next step.

Carson got his braces off the beginning of February (& likewise is done with head gear at night time as part of his orthodontic process)...Yay!! Buuuttttt...can't say that he liked the retainer much better...in fact, it was another time that Carson had to step up and do something he wasn't really excited about. 

Braces (in a way) were nice because once they are on...you don't have the option of taking them off/out. However, a retainer is removable (& the first days are always a little harder because you have to adjust and we've seen with Carson that you also produce a lot of extra saliva because its something new in your mouth.) We got home from the appointment and Carson REALLY didn't want to put the retainer back in after eating. It just wasn't comfortable, makes talking harder, and is just a pain! Although Carson didn't say this...it felt to me like he was just disappointed and exhausted. He get excited about one thing (getting his braces off)...but he was just thrown ANOTHER obstacle (a retainer that needs to be worn all the time). It's always something it seems. After tears (for both of us), sitting down with him on his bed, giving him some time and trying to explain that there are so many things in life that just aren't fair and so many things we have to do that definitely aren't fun but are for a purpose, Carson put the retainer back in and he came outside to get back at life and playing basketball. He had a smile on his face and enjoyed the rest of the afternoon. If only, I could move past my disappointments as seemingly fast as he did! Proud is an understatement! And although it makes me sad that he has had to learn that lesson so early in his life...I have no doubt it will serve him well in the years to come! 

My next step was to call and get his next scopes in Cincinnati scheduled. When I called (in February)...they were already scheduling out to the end of May. So Carson's scopes will be May 25th, the day after he gets out of school for summer. I also followed up with a call to pulmonology regarding getting a CPAP machine at home since we will have such a long wait before the scopes. 

I was initially told no by the pulmonology nurse, 'we can't give you a CPAP machine for home because he is not currently on it.' She told me she would check into options but I didn't receive a call back for weeks so I just took that as a closed door for now. However, about a week ago, I got a call from the pulmonologist herself and she said after going through the chart and notes herself, she fully agreed that it would be a great idea to get a CPAP at home, use the settings that were attained from the most recent sleep study and go from there (which was exactly what I was hoping for). Not only that but she has seen many kids in Carson's situation and gave me more of an idea of what to expect and what works best typically. I got off that phone call with a smile on my face...and very HOPEFUL!  Hope is such a powerful emotion! 

Dr. Torres-Silva thought I would have gotten a call from the home medical equipment this past week for Carson to be fitted and the machine to be delivered. Although that didn't happen, I do hope that we get it soon. Prayers there are no hold ups with insurance or the supply chain! And also, I am praying that we are able to find a mask that fits properly (meaning it doesn't have to be so tight) and as always, for Carson's comfort in this adjustment phase...another obstacle that he'll get to cross.

And the last little nugget...I had it on my list to call and get a follow up appointment with Dr. Lin (the plastic surgeon in St. Louis). He has followed Carson sporadically since the NICU days for scar management from the teratoma. So far, we have not needed anything but I think the scar is starting to restrict Carson's neck range of motion some so I was calling for a follow up. Turns out Dr. Lin is closing his clinic and will no longer be seeing patients. We will be referred to a new doctor there but in the midst of researching the new doctor on the Cardinal Glennon website, I stumbled across Dr. Lin's video. Dr. Lin happened to mention how Cardinal Glennon just has a different 'feel'...and although he didn't know why EXACTLY...he thought it might have something to do with Cardinal Glennon's mission...

"Through our exceptional health care services, we reveal the healing presence of God."

I, again, was reminded of how God determines our steps and cares for us. It filled me with gratitude that Cardinal Glennon is where our journey started and while I believe many doctors work in this capacity...it's a breath of fresh air when a whole hospital system is working under this mission. Jesus came to heal and I will continue to pray for Carson's complete healing! Help me keep my eyes open to all the ways God is moving.

Soundwaves in Nashville

One of our snow days!

Basketball <3

The boys officially gained Kelly as their aunt!

Fun in Arkansas with cousins, with their newest toy...rollerblades!