Orthodontics & Back to School...waiting on the sleep study

Whelp...it's been a LONG while since I've posted anything...so many times I meant to send out an update to ask for prayers for this or that and never made it to the computer. Carson and Kellen are back in school...we went back to in person school in August with precautions in place to limit exposure between kids & teachers. We feel comfortable with the set up and I have spoke with Cincinnati in regards to Carson. They feel like Carson is no more at risk than any other kid because his lung health is good. This was what I had thought all along with COVID but hadn't actually talked to anyone that knew Carson's case well. 

So far, so good. It was a big change from last year...the boys switched buildings, get grades now, have more homework, and more work than play but they have adapted well and had good reports from their first quarter! Carson still has an 'aide' that is there in case of emergencies and to be an extra set of eyes on Carson at recess, lunch, etc. He has the same aide as last year and for that I am grateful!

I spoke with Cincinnati prior to school starting trying to figure out what the next step was for Carson, what it would look like in light of COVID, and when. The CPAP titration sleep study is the next thing and it is just to 'mark the box', see if it is or isn't an option for Carson. But for Carson, they would do what they call CPAP desensitization for a couple days/nights...hoping that will help him because CPAP may not be a pleasant experience. He hates having things on his face. So...timing is up to us but I've not scheduled anything yet because in August Carson started on the orthodontics train! I didn't want to do too much all at once and Carson not tolerate it well. So for now we are just waiting on the CPAP sleep study.

Carson's orthodontics though has been a pleasant surprise...as I have mentioned before, every dental visit is a visit that involves anxiety and unpleasantries for Carson just because of his oral sensitivities and gag reflex. SO...when we started with orthodontics and the recommendation was a palate expander and braces now, I had some anxious thoughts about how that would all go. He got his palate expander in August...I really didn't know if he would tolerate getting it put in BUT he surprised me and did REALLY well...no problems at all except for the last little bit with gluing it in place. That was not pleasant but we all survived (the orthodontist included...Ha!). We head back next week for the braces...prayers ARE appreciated!!! I'm told they won't be as bad but it does require that same glue that smells/tastes weird! 

Hopefully we will find out how long the expander has to stay in next week also. My thought is to wait on the sleep study until the expander is out! The expander has posed extra challenges with eating and speech but Carson has adapted fairly well....big improvements from the week immediately following! I really didn't know if he could go to school because his speech was so hard to hear and understand initially (that improved). Eating has been more challenging but we are navigating it. I pray daily for patience and guidance for me...If I could only give him MY appetite!

For now, we are enjoying life as much as possible...we've done a lot of hiking recently in Southern Illinois and Southeast MO...the colors and sights (minus the copperhead snake..aaaah!) have been beautiful. I'm praying that this waiting period (since last spring) may allow for God's work, for growth in Carson's airway, that MAYBE we won't need CPAP after all...that maybe by expanding Carson's palate it may actually help with opening some of his upper airway when he sleeps. That may ALL be wishful thinking but I am praying (& know) God works in this waiting! 

Thank you as always for all of you who continue to pray for Carson & our family!!

Bearcat Fridays!

Elephant Rocks

Have a Happy Halloween!

Quarantine

Just over a week of quarantine and although there are tense moments most days...we are making the most of it and I'm so thankful these three have each other...we've played in the creeks and in the woods, rode bikes, done several art for kids hub drawings, built lots of legos, spent as much time as possible outside, and attempted some second rate 'homeschooling'. However you are doing this time is great! I think there are so many blessings in it and that can come from it. I love to see how God works and I'm so glad we can always trust His ways.

Two weeks ago, we were in Cincinnati & all this Covid stuff was just starting to spread...I had no clue this is where we would be now. The results from Carson's sleep study and our decision to wait to decannulate was SUCH a blessing in disguise!! Carson is safe with a trach and I feel so much more comfortable having the trach with coronavirus floating around. I would be scared to death, right now, if we had decided to take his trach out two weeks ago! So thankful that they are times when you see God's mighty ways work out in your life and how even disappointments sometimes work out in your favor. God is good ALL the time!

Just remind me of this the next time I get irritated things aren't happening in MY timing!

Praying for all of you too in this ever changing time!!

Yes, my soul, find rest in God; my hope comes from him.

Trust in him at all times, you people; pour out your hearts to him, for God is our refuge.

Psalm 62:5 & 8

We can't rush this.

Well, we are back home...Carson still has a trach.

I was reading my last post and had to kinda laugh...basically all of my prayers were answered (other than getting good (best case scenario) news). But then, why do I still feel so disappointed...

Carson did so well with the process of the sleep study...he seemed a little unsure with his trach out but he said he was okay and he was able to sleep enough that they got adequate data. They left the trach out the whole night.

The sleep center said they got good data. And Preston said Carson coughed some but not a whole lot. They did see some improvement. So....the only disappointment is that the improvement wasn't enough to say he can take his trach out and he doesn't need any additional support.

The improvements...he had less obstructive events (but still considered moderate sleep apnea) and he didn't desat with these events (his O2 levels did not drop much).
However, he still has moderate sleep apnea and that isn't good. The doctor gave us three options that he was okay with. 1. Go ahead and decannulate, knowing we'd need to get CPAP set up at a later date. 2. WAIT on decannulating and get CPAP set up at a later time but BEFORE going forward with taking his trach out. 3. Do nothing different...continue on with a trach. He said time or waiting could work in Carson's favor - that the area that is likely causing the obstruction MAY continue to open up as he grows but that you can't say that for sure either.

We decided to go with option 2...this was also the doctor's personal preference. We will attempt another sleep study with CPAP (at a later time) and see if that improves the results.
I guess alot of my disappointment comes from the point that I was hoping for big improvements on the sleep study because all surgical interventions have been done and we kept getting - what seemed to be - really good news from the most recent scopes. Because trading a trach for CPAP (something that he has to be hooked up to every night, that has to be taken with him anytime he'd go somewhere overnight, that is another machine that is giving him aid) just doesn't seem as big of a win. When we were in the NICU every time we got rid of a machine from the room (Nitrous, the ventilator, IV poles, etc) it was a little victory...so putting one back in his room just doesn't seem quite so happy. I'm not trying to sound like a Negative Nelly...its just not quite what I was hoping for. And on top of that, although I know many people use CPAP and that it is a GREAT thing...Carson hates having things on his face so I'm not sure how it will go, it may not be a good option for him....it's ANOTHER sleep study, another process. It's hard going on this emotional roller coaster.

With all that said..I'm thankful that there was some improvement...we know that he CAN sleep without his trach if something were to happen...thankful for doctors that are looking out for Carson...And thankful that Carson is able to roll with the punches. He seems totally fine coming home with a trach. He mentioned several times in his prayers that he was thankful that he did 'good on my sleep study.' <3 And he did...he slept without his trach and he did everything he was supposed to...sometimes it just isn't God's timing. And I need to accept that. I know God has big plans for Carson and they are good!

In other news...we had a great trip. Poppy got to come along for the first time and Carson and Kellen got to show him a lot of our favorite things!

Lunch in Paducah at the Skate park

Dumping 80 lbs of soda tabs from school

The wonderful craft room

Sleep study champs

The zoo

I read this in a devotional on the way home today..

"It's okay to have things. Just know that the real life - deep joy and true meaning - is found elsewhere. People. Relationships. Compassion. Community. Food. Faith. Doubt. Love. Laughter. Sweat. Struggle. Tears. Triumph. This is what it means to be alive." ~Gideon Heugh

...it hit me...we were alive this trip...I think I experienced everyone one of these THIS trip from the fun we had, to the people that were with me, to so many texting/calling/checking in on us, the prayers that went with us and covered us, the upsets, tears, smiles, laughs, etc....deep joy - true meaning...real life is a great thing to experience.

Again...thankful for each one of you and every single thought and prayer sent our way!

Sleep study...here we come!

The time is here...we will be leaving tomorrow (Monday) morning to head to Cincinnati. Carson will have the sleep study done on Tuesday night. My understanding is that they will take his trach out for the sleep study but will then put it back in, in the morning regardless of how he does during the sleep study (if they don't put it back in during the night). He basically has obstructive sleep apnea to some degree so this will hopefully tell them that it has improved but if not, they will also get information on what is needed (CPAP, etc).

My prayer is that no assistance is needed at night time but I am going as surrendered as possible. If the sleep study goes well then Carson will be admitted to the hospital Wednesday night and will undergo a two night decannulation (taking the trach out) trial. And again, depending on how that goes...the next steps will be determined. Best case scenario, Carson would come home without a trach.

I will do my best to update along the way. We get to stay at the Ronald McDonald House this time so the boys are pumped! Please be praying that Carson is able to stay calm and that sleeping with his trach out does not cause any anxiety. I'm also praying for good news but more than that, that we get accurate results. Also, he has miraculously been well through some awful sicknesses at school other than some allergy drainage. I'm hoping that the drainage doesn't cause a lot of coughing at night (again, just so we can get good information from the sleep study).

Thank you as always, for all the prayers! I'll have to post some pictures another time, but Carson & Kellen's school has been collecting soda tabs for them to take to the RMH. The collected 80 pounds and it has made the boys even MORE excited about going! It was such a sweet gesture of support from his friends, classmates, and teachers!

For you created my inmost being; you knit me together in my mother's womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. My frame was not hidden from you when I was made in the secret place, when I was woven together in the depths of the earth. 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 139:13-16

I was wrong...good news!!

I will be wrong, a hundred times over...in this case!

We got good news yesterday after the scope [MLB]! They were pleased with what they saw, even the nurse practitioner gave a little [happy] *gasp* when she saw his airway during the scope. Dr. Smith (this was the first time Dr. Cotton was not there, since retirement) was encouraged by what he saw, and this was not even at his best. Carson has sounded better! Dr. Smith wants to go forward with a sleep study because Carson's issues have been at night and to get the most accurate reading, we will actually take Carson's trach OUT for the sleep study!! It will be put back in if there is any concern during the study. Then, if the results are good on the sleep study, we will continue with a two night decannulation (taking his trach out) trial! Guys...THIS is the next step we have been waiting for forever but especially for the past 2.5 to 3 years! This is basically 'best case scenario' news!

There will still be some hoops to jump through even if the sleep study goes well & definitely if it doesn't. Taking a trach out is very anti-climatic. It is simply removed and the hole closes on its own. In Carson's case, Dr. Smith does not believe it will close on its own and will need one or two surgeries to actually close it. They have learned or other hospitals have learned, you do not stitch the stoma close because that can lead to serious complications, even death. Also, we will have to monitor Carson and see how he does if they do decannulate in the near future. He may have a need for continuous pressures (CPAP) at night or when he is sick. That is all TBD. But we will take this good news! Thank you SO MUCH for praying along with us!

The sleep study is scheduled for March 10th. I'm starting the prayers now, that he will be 100% healthy for that!

Also, Carson did well getting the IV prior to anesthesia and then using IV Versed before the actual induction process. This seems to help keep his anxiety level lower. He rated his 'nervousness' as a 5 out of 10 for one of the nurses. I will take it! Because I'm guessing 10/10 would have been his rating on prior visits during the induction process. We are so very proud of him! And when his anxiety is less, it makes mine less too. This was a good trip!

Stop #1 on the way up!

Their favorite skate park!

Obligatory pre-op picture!

Grater's...where we celebrate good news and keep on keeping on after unwanted news!

On our way to Cincinnati

We are headed to Cincinnati. I’m kinda sad/frustrated because  he has sounded great but got some sort of something Saturday & feels fine but sounds congested. I’m guessing we’ll get a ‘He’s sick. Come back.’ I called and the NP said we could reschedule or go ahead & come. Preston thought we should go. So, we are on the way but I’m not as hopeful for ‘best case scenario’ news.😩But, I’ve also been wrong before.
The MLB (scope) will be at 9:30 ET tomorrow (Wednesday). Praying for Carson’s peace of mind as always but also that the doctors get some sort of helpful information. Even if it is, ‘This is what Carson’s airway looks like when he is sick.’

EIGHT!!

Guys! I am behind [shocker]...Ha! Carson and Kellen turned 8 years old on the 8th of November. Ever heard of a golden birthday? Well, that's what their 8th birthday was this year (since they turned 8 on the 8th).

We had a fabulous time celebrating with friends and family! The original plan was to have several friends over and just let them loose in the bottom of the pond [we are in the process of digging]. That seemed like a great idea until it rained and rained...and rained.  So we switched gears & kept it in the yard, but strictly outside. No one wants 15-ish boys in their house. Ahhh! They had fun...their friends had fun...and we had fun watching them! Win, win, win!

I reminisce throughout the year but this time of year, I find myself reminiscing a little more often to the time of their birth and removal of the teratoma and the following weeks, months, years. To think where we came from, from the fears we had, the unknowns, the struggle...to now! Some of our struggles & fears are the same but so many are COMPLETELY different.

"I always felt like I was waiting for the gift. But I've come to see that the waiting IS the gift." 

I read this in a book recently and I could not write something more meaningful in regards to Carson's journey. We are still waiting in regard to getting his trach out/his eating but there has been SO MUCH joy in the waiting! And I'm oh so thankful we didn't know at the beginning that it would be 8+ years but I am also so thankful that around 18 months or so, it hit us that we need to stop WAITING for his trach to be removed to start living but to just START living right where we were. It looked different then...we stayed home a MAJORITY of the time to keep him healthy but that slowly gave way to park days [lots of park days], vacations, even beach vacations, riding bikes & scooters, to play dates, school, 'swimming,' climbing rock walls, and hiking to the top of a mountain. It was just taking little steps along the way, making the most of what we were given, yelling at God sometimes, crying, asking 'why', but in the end stepping up to the journey that was ahead of us. Searching for hope when we didn't feel it, looking to God but also to each other for hope, encouragement, and steadfastness [is that a word?]. The most growth happens in the valleys and I hate to admit it sometimes because I worry I'll be sent more 'valleys' to shape me into the person I am to become but it's the truth. I still don't know I can say I'm thankful for the teratoma & all its taught me but I am so very thankful for the lessons I have learned and the shift in my perspective to more of the important things. Because as much as decannulation [getting the trach out] and Carson eating seems like the end goal for now, I know perfectly well there will be more challenges along the way. I hope that all these things we've learned can be adjusted and used in those challenges too!

As I hope you know...you all have been a part of this journey, the cloud of witnesses, the hands & feet of Jesus, and the safety net of prayer warriors that has strengthened us through the last 8 years. Much love to all of you too!

Other updates:
We will go back to Cincinnati for a bronchoscopy January 8th. We are hopeful that we may get good news! And praying that Carson is healthy and an accurate picture is seen by the surgeons.

Carson has not lost weight...so that's a plus [but he hasn't gained either]... no, he has NOT had some miraculous increase in appetitie. And I find myself trying to greatly encourage more food when really my idea was to put that ball in his court [totally]. Some of that 'encouragement' stems from the fact that he needs to keep experiencing different textures/foods and his body needs good protein, etc. We are hanging in there and I AM thankful that he has not lost weight. Continued prayers are appreciated!

Oh...and Carson had a dentist appointment again today (they have him come every 3 months to increase familiarity) and he ROCKED it! He didn't have to do bite wing X-rays which was great but he laid back further in the chair and only gagged once [and that was because a piece of plastic got in his mouth somehow!!!!] And he used the straw sucker many times. He still doesn't want the water shot in his mouth and hasn't attempted their toothpaste because of the grit but I'll take it : ) They were happy too and said he can come back in 6 months since it is easier for him. Next step...we need sealant on his teeth!

Last thing...I hope everyone has a fabulous Thanksgiving (there is a reason Carson & Kellen were born in November...extra reminders of all I have to be thankful for!) and a wonderful Christmas season!

Lego Ninjago...family fun!

The entire crew...complete with lego ninjas & ballerinas

Friends!!

Bedtime chaos!

At least they are all still laughing! [that's not always the case]

A golden birthday!

Wanted to repost this from four years ago (11/11/2015)
11.11.11 ...Four years ago, Carson was going through a life saving surgery (his body was shutting down because of a 2+ pound teratoma on his neck). It was a miracle surgery...no one knew what the outcome would be but we were all praying. He went IN to surgery with facial features that you could hardly recognize and came out battered and bruised but with all those sweet, perfect facial features in place (complete with a 'butt chin' just like his daddy and Kellen)! I thank the Lord for the surgeons and nurses that day...those that took care of our baby when we couldn't. I'm so thankful that we've had four years with Carson, his joyful laugh, contagious smile, and all his silly antics. We didn't know what was in store for us (& thank God because it has been rough at times) but the joy overcomes it all! God truly knows what we need when we need it. One of those being Kellen...not just a brother but a twin who can support Carson and ground us in only a way a child can! Sometimes we have to wait days or years to see God's plan (or maybe we will have to wait to ask him face to face on some) but we CAN put our total trust in God and just focus on finding joy in each and every moment!

Thank you to so many of you that have prayed for them since their birth (& even before)...I will never be able to thank you all enough for the support and love that have been showered on our entire family!

First time seeing Carson after surgery 11.11.11

Four years ago [& still one of my favorites]