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!

10! Double digits! A decade! ...and a quick update

Wow! Carson and Kellen are 10!!! So thankful for these ten years and the joy these two have brought! We've celebrated big over the past week or so and still have a couple more to go! Every birthday deserves multiple celebrations!

#10

Celebrating with some of their cousins

We were just talking in small group about how we celebrate things {Easter, Christmas} to remind us of God’s miracles/presence in our lives and this world. And my prayer has always been that Carson and Kellen will understand the magnitude of their birth and lives at some point and I hope that in some way, our retelling of THEIR birth each year will help and allow them to see the miracles. I can get caught up in what hasn’t happened yet or things that need to change but I took time today to remember just how God saved these two, has allowed them to thrive, and all that He has done for us in and through their lives and journeys!

Ten years ago, they were born into an OR of 42 nurses & doctors…each with a role. They were all there to give them the best chance at survival and to keep me safe. I’ll never know the number of people that were praying that day FOR them and US along with family that came to wait with Preston as he waited for updates throughout the delivery. Kellen had to be a fighter because he was delivered 7 weeks early and under general anesthesia…so it took him a little longer to get those lungs working and figuring out how to eat. Carson had a whole other fight and the doctors would take on a 10 hour surgery 3 days later to remove a mass, bigger than his head, that was being fed by his carotid artery. No one could name ALL the risks that the surgery entailed and no one knew how it would turn out. Risks that he may not be able to talk or swallow or breathe on his own or… survive! But, Carson did! And although he has gone through more than 30 surgeries and more suffering than I care to remember (& still more to come)…he gets to do most all the things that he wants to and has a smile on his face more often than not. And I have no doubt, that is, in part, because he has his best friend by his side each and every day!

 

There are so many other details that are part of the miracle of these two but one that came to mind again was how God puts people where they need to be for the purpose He has designed for them. Dr. Yang & Dr. Vlastos were those people. They didn't care to take the chance, to GIVE a chance, to a little boy that would be named Carson. Dr. Vlastos gave us the hope we needed to cling to. And Dr. Yang was gone from that hospital facility less than a year AFTER Carson was born. Dr. Vlastos was gone, I believe, five years later. God protected Carson and Kellen from so many other complications that are part of many premature babies journeys. I cannot thank God enough, even though a grumble some days!

…Against all odds.

Dirt Dessert and Brownies were their requests

Group hug!

Stoddard County Fair

Both boys really enjoy soccer and Carson got his very first goal this season!

The Croods...Halloween style 2021

I realized I never got around to doing an update after our trip to Cincinnati in August. It took a little while to get the official results, and then it took me awhile to actually process it all. It was disappointing and disheartening...not something that really surprised me since we were there with him but nonetheless, I was praying for a miracle. A miracle that either CPAP would just be a breeze for him or the best kind, we wouldn't need CPAP at all.

That was not the case...CPAP is still needed and may be needed for forever. Answered prayers were that Carson did really well trying on the masks and working with the respiratory therapists on different fits, flows, and masks. In fact, the first night, we were pleasantly surprised at how well Carson did. He slept for about 6 hours with one mask on. However, the next night, the RTs had the mask MUCH tighter and after being on night 2 of less than good sleep and it being in the middle of the night and still adjusting different masks and cinching them tight...and not being comfortable, and I'm sure some nerves were involved, and feeling queasy to your stomach, the RT thought it was enough and ended the CPAP titration study saying 'CPAP was not tolerated.'

Carson was happy to go home without the CPAP (they weren't comfortable) and he felt like the trip was a success in the fact that he did what we wanted him to do...he tried the masks and did his best sleeping with the masks on. And, I would agree!

Long story short, and after me having to explain the results to the nurse who called...since she was just relaying the doctors thoughts. They did get enough data to find a pressure that was adequate for Carson. He didn't tolerate it all night or even well but we did get a pressure. The doctor wants us to return after the new year for more scopes and to discuss the next steps. I'm hopeful (& the nurse thought this was a good and likely next step) that they can send a CPAP machine home with us and we can practice with it at home and allow Carson to get used to it in a comfortable setting before attempting another sleep study.

It was disheartening because I don't want more sleep studies...they aren't fun for Carson. I don't even want CPAP but if we do need it, I hate that we may have to go through a big adjustment phase before he is comfortable with it. I want to move on with the next steps for him and get the show on the road but for now, we wait. We wait partially for more scopes, and partially because Carson is still finishing up head gear as part of his orthodontics journey. I want there to be an easy road for Carson but sometimes that just isn't God's plan.

These types of things take me a lot of time to accept...to accept that my kiddo just has to walk the difficult road. I want to kick and scream and tell God how much I don't like His plan even though I know His plans are better than mine. Even though I know He loves Carson way more than I do. It's easier for me to just go on about our daily lives and act like none of this even happened but I know I need to accept it because whatever journey is Carson's, I want to be there, encouraging him along the way, excited to walk it with him, excited for whatever decannulation may look like for him (and still praying that decannulation IS and WILL BE an option at some point soon).

...Against all odds

We are hard pressed on every side, but not crushed; perplexed, but not in despair; persecuted, but not abandoned, struck down, but not destroyed. We always carry around in our body the death of Jesus, so that the life of Jesus may also be revealed in our body. 

2 Corinthians 4:8-10

I say it alot, but it is so very humbling to know there are so many that still pray for Carson and our family on a regular basis. Thank you! I never, ever thought he would still have a trach at his 10th birthday but I also never, ever thought he could do as much as he does WITH a trach. It's just life for him and we are all here for it!

Headed to Cincinnati

We are planning to head to Cincinnati in the morning (Saturday). I’m having to type this out on my phone so I will keep it short.

Details aren’t real clear yet partly with covid procedures in place, partly due to insurance, and partly due to playing phone tag but the general idea is the same as I mentioned in the last post. We will go Sunday to allow Carson to see and be fitted for a mask and feel some pressures. Then, the actual sleep study will be Monday evening assuming that Sunday goes okay. 

I’ve had some anxious thoughts for Carson but really trying to focus on “What is” vs “What if” thoughts.

Here are prayer requests from the last post:

• That Carson can tolerate CPAP

• That there will be a mask that fits properly

• That God will guard his mind from anxious thoughts and allow him to rest with peaceful thoughts

• That maybe, just maybe, his airway will have healed more and already be open enough that he does NOT even need CPAP – this is my miracle I’m praying for

• To guide Carson, us, and the doctors in determining if CPAP is the best option to allow Carson to thrive

• And that the Ronald McDonald House will be accepting short term stays by August. Currently, they are not due to COVID. The RMH is what all 3 of the boys have been looking forward to!

*We thought that the last one had been answered when we got a cal that they had opened the RMH back up but then we got another call and they had to cancel due to a positive covid case so we will be staying at a hotel.

God is good and I'm going to be praying expectantly to see His goodness in so many ways during this upcoming trip! Thank you to all those that join with us in prayer and positive thoughts!

“For the spirit God gave us does not make us timid, but gives us power, love, and self-discipline.” 2 Timothy 1:7