Changes, adjustments, but still mostly fun!

We are home and oh, how wonderful, it is to be in our own home! We are getting more used to the changes in our routine (well, most of them, with the exception of medication time..two thumbs down, ugh!). Carson has 4 tube feedings a day now because he doesn't want to eat or drink as much by mouth with the t tube in (it sits fairly high in his throat and makes swallowing more difficult). I am thickening liquids also for him because the aspiration risk is high and he coughs when drinking regular water. Thickening the liquids helps slow them down and allows him more time to manage and swallow them properly. Night time is also not quite as restful (at least for Preston and I) because Carson coughs more and needs to be suctioned sometimes in the middle of the night (& that's a 2 man job) but I can say it is easier now that Carson doesn't have to wear the neck brace. And hopefully it will also improve with time.

We got home Wednesday evening...Carson had the appointment in Cincinnati Wednesday morning and the doctors discontinued the neck brace and did a scope (while he was awake) in the office. The doctors said all looked good! While it seems simple enough...it took 4 adults to hold Carson down & still enough for the doctors to perform the procedure. They first scoped his t tube and then scoped through his nose and down to look from above. It was AWFUL! Carson fought hard for all 10 minutes (which may as well have been an hour). He was sweating and I was sweating by the end of it. (& we get to do all of it again, each month while the t tube is in : ( - in STL)

These past two weeks were hard for me...I thought I was prepared going into these surgeries and when plans, procedures, and care for Carson changed, it threw me for a loop. It was awful to watch Carson suffer day and night, it was hard to hold him down time and time again (and still now with medications), its not just surgeries and the immediate post op pain, but then knowing that Carson will only be able to whisper for the next three months, that we will be doing this irritating medication twice a day for the next three months, that simple things like getting a drink of water (on hot sunny days) will be harder for Carson is all very wearing on my heart. So even while the surgery was successful and things are going well overall, I've found myself missing some of that joy I usually have.

And while, it is easy enough to get caught up in all the awfulness...there are many blessings (great doctors, Carson's resilience & forgiving nature, he CAN at least whisper, we CAN feed him through a G tube, we only have to do the medication TWO times a day -not the 6x/day like in the hospital, we have a great support system...) and I am thankful for pictures to remind me of the smiles and fun times even in the midst of suffering. We will take one day at a time and while three MONTHS seems a bit overwhelming right now...I know it will end and will hopefully go by quickly. I've learned once again that it is a lot about shifting my focus, truly surrendering and trusting that God is in control, that he can use this suffering for good, that he will protect Carson's mental and emotional health despite the repeated unpleasantries, and then focusing on the positives, doing the next thing next, and enjoying the moments. (And realizing the potential of this surgery!) Thank you so much for your prayers..it got us through another round of surgeries. Please be praying for the medication times, that Carson can remain as calm as possible, for new ideas to help with distracting him, and that we can help him understand the reasoning and need for the medication -as much as a 4 yr old can.

Here are a bunch of pictures from the past two weeks.

May the FOURTH be with you (after Carson's first bronchoscopy May 4th)

Zoo time..the COOLEST bubble inside the meerkat display!

ZOO train... a highight for all of us!

Graeter's - the BEST ice cream ever!

One of the first medication times...many tears but Carson did it!!

I don't really like sharing this picture but it is real. This was the first night...Carson wanted to be held and all I wanted to do was take any pain away possible...may have been the best therapy for me.

Kellen was such a trooper...he hung out with Nana (& they found ways to have fun)!

More smiles in the following days (at least between med times)

You need 3 adults to help to kids paint in the hospital! So thankful Mimi & Papa were able to be there!

Popsicles are always a highlight!

The first afternoon when Carson FINALLY was able to tolerate capping his t tube! Just chillin' with his best buddy!

OH, Ronald!! Carson loves this statue!

Who says you can't play a little t ball with a neck brace on?!?

Or ride a bike?!?

At the Cinicinnati Children's Museum

The coolest park in Blue Ash...turf hills to slide down

Blowing dandelion seeds! (He's never been able to do this before but can now since he is breathing out his mouth and nose)

Farewell Ronald! At least for now... (we will go back in August to have the t tube removed)

Back at home!!! They tried every one of their toys out Wednesday evening.

My superheroes!!!

We are out of the hospital but still in Cincinnati

Well, since last post, we have had a couple very encouraging changes. First, a room at the Ronald McDonald House opened up and we were able to check this past Wednesday. It is such a HUGE blessing...there is a craft room, play room, TVs in multiple different 'family rooms', a playground, great food, and just more space to move around in.
The procedure on Wednesday went well, they did remove some granulation tissue that was above the first t tube and they decided to go ahead and put a new t tube in that extends further up (helping to stent any 'floppy' structures). The doctors sounded like it was a sure fix, however, Carson still did not tolerate capping Wednesday or Wednesday night. We knew that if we couldn't get the capping to work out we would be in another pickle. Thursday morning, we started with 10 seconds & Carson still hated it but we tried to make a big deal out of every small win. I went over to take a shower, etc. and I first got a text from Preston...he made it 25 seconds! And then I got a call and Carson HAD the cap on & was breathing just fine. PRAISE THE LORD! From that point, he kept the cap on all day & night. We felt 100 pounds lighter and Carson ended up being discharged the next morning. We were so proud of Carson because he worked through his fear and anxiety about the cap and stuck with 'practicing'. This kid is a rockstar!  He was SO excited to get over to the RMH & sit with Ronald (& see Kellen). He played hard that day!

The plan is to stay here until Wednesday morning when the doctors will scope the t tube one more time & make sure everything looks okay then I believe we will be going home! However, I'm holding my breath a bit because as if we need another hiccup but Carson ran a really high fever last night (104)...we called the doctor but they said it was up to us if we wanted to bring him in or just monitor him at home. We decided to watch him (knowing he would get more rest if we were able to stay here). Thankfully, his fever broke about 3 am. Please pray it was just a quick bug & he will remain healthy...also for guidance for Preston and I...although the t tube is similar to the trach, it is still new so we are still trying to figure out all the ins and outs and mostly just what a normal baseline is for Carson with a t tube.
And to make things even more interesting...Kellen has thrown up several times this morning...oh the joys. Praying, praying! And so thankful that Nana is still here to help! Thank you for your prayers and support! Love to all!

What a ride (that I wouldn't mind getting off of at times)!

I'll first apologize for the silence...we initially didn't have access to a computer and then plans took a totally different direction and I had no extra energy(& limited time) to even try to explain what was going on. We are in Cincinnati...tomorrow Carson will go back to the OR at 9:05 am ET for the doctors to further evaluate his airway.

But let me back up, we had the first scope last Wednesday and we got basically the same report...we would go forward with surgery on Friday with a likely stent, possible graft, and stomal revision as necessary. Thursday, we did get to go to the zoo, and we had a blast (wow, that seems like a long time ago)!! Some of the boys' favorites were the baby cheetahs, the train ride, monkeys, penguins, polar bear....let's just say all of it!
Friday, we headed into surgery...first update was that they would be doing a rib graft (ugh, took a little air out of our sails) but then the last update we got (4.5 hours later) was that they did NOT do a rib graft. Long story short, they took a different approach. First off, they knocked Carson's two front teeth out during the scoping process (that just put a bad taste in my mouth to think of them getting rough with our baby). Carson now has a t tube (similar to a trach but it is a long open piece down AND up in the airway from his stoma with a port to the outside of his neck. (Its probably easiest to just google 't tube' to understand it). They did move his stoma down. The T tube takes the place of the stent...in theory this sounds great...you can put a cap on the exterior portion and then breathe out of your nose and mouth like normal. However, Carson has not been able to tolerate 'capping'. After a couple scopes (in his room), it has been determined that he needs to go back to the OR (tomorrow) and they will see WHAT is covering the top portion of the tube and then decide WHAT needs to be done. Although, Carson seems to be feeling better, less pain, etc. we are in a holding pattern until we see what they do tomorrow. Lots of things up in the air still...so more chances to put in all in God's hands (and these doctors') and just trust.
This stay has been harder for me...I thought I was prepared going into the surgery, but many little things along the way have tried to take that peace away. I have felt the range of emotion... numbness, peace, anger, frustration, hope, despair, but I do choose to just trust, take the next step next and stay in the moments. This is hard at times, because with this t tube, we have to administer a medication (sodium bicarbonate) into the airway EVERY 4 hours (through the day AND night). It is very irritating to the airway, it is scary for Carson, and causes a lot of discomfort as you have to cough a lot. Carson fights it more some times than others (& I really don't blame him). I don't blame Carson a bit but you can imagine the frustration that comes out in lots of unpleasant forms (he is at the mercy of the doctors, nurses, and us with little say in his care, he can't make much noise at all, he is stuck in a boring hospital room, and he has some pain). With that said, we are continually amazed at his attitude the majority of the time and his willingness to find joy in between medication times.

Prayers for tomorrow are appreciated...just for clear thought for the doctors and a good solution that allows Carson to continue on improving and get home. Prayers also that the Ronald McDonald House will open up (we were very disappointed as we thought we would be in there a WEEK ago and there is still no openings available...long story here but it did not work out as expected). Kellen and Mom have been staying in a hotel. Prayers for all of us to just take one step at a time, finding the joys in each day, the miracles amongst the pain, and peace that God only gives.

I will post pictures as soon as I can. Thank you so much for the many prayers (& I hope this makes a little sense...its a lot of new info, even for us!

Can we go to the zoo first?

The first bronchoscopy is scheduled for 9:15 am ET on Wednesday. We head out tomorrow (Tuesday) for Cincinnati. Quick run down...Wednesday they are just doing a scope to evaluate his airway and make sure nothing has changed significantly since December (that would change the plan for a second airway reconstruction on Friday, May 6th). Then, Friday will be another big surgery...they are planning to reconstruct (stabilize) his airway at the level of his current trach. It will be a 5-6 hr surgery...that will involve moving his trach site down and possible using a rib graft, then stenting the airway open for 10 days while it heals. Carson will be in the hospital for 5-7 days. The stent would then be taken out May 16th. Prayers are appreciated...for the many details of the stay (travel, rest, nice weather, & so many I don't even know), clear thought processes & minds, steady hands for the surgeons, & peace & a quick recovery for our strong Carson. Carson is so good to stay in the moment and doesn't seem to get overly anxious. We try to stay focused on the fun we have in Cincinnati and even in the hospital for Carson's sake (& ours). Up until yesterday, Carson always says he is ready to go and ready for surgery. Last night, when Preston mentioned leaving for Cincinnati in a few days, Carson said, "I don't want to go." And when we asked why, "Because it will hurt." {As I fought back the tears, I went to give him a hug & reassure him that yes, it will hurt but only for a few days & that he bounced back quickly last time}...his next statement, "Can we go to the zoo first?"....

Now, THAT is a perfect example of shifting the focus, finding the positives, and embracing our journey! Thank you God for the sweet, brave, courageous soul of Carson. I pray I can keep the same attitude.
P.S. A baby giraffe was just born a couple days ago at the Cincinnati Zoo so we are pretty pumped to see it!

I will update as I am able but don't worry if you don't see an update, it's hard to find a computer & the time to do it sometimes. I continually am working to surrender it all to God, to shift my focus from the pain of seeing my sweet boy suffer to the potential this surgery has to improve his airway. I am praying for a BIG miracle, maybe even that they don't need as extensive of a surgery but I am also praying that we see the many small miracles that I'm sure will come! The first being the wait list at the Ronald McDonald House in Cincinnati is only ONE day {that is unheard of}...it is usually 2-3 weeks or more. This means Kellen & Mom will be able to stay in Cincinnati longer and be an encouragement to Carson {& Preston & I}.

"Be strong and courageous. Do not be afraid; do not be discouraged for the Lord your God is with you wherever you go."

Joshua 1:9

Thank you for all the prayers...I have to attach some of these pictures from the past month...we've had a lot of fun! I will be so ready to get back home, with the surgery behind us, and return to all the FUN of normal life!

Praying for lots of those loving, peaceful rays! (this is in the chapel at our church)

Tball pros...

Or maybe not...the flowers are equally intriguing!

JOY!

Make that double joy!

SDC Train!

Water makes everything more fun!

The boys had so much fun with Preston's turkey decoy (once they figured out it wasn't real!)

Not only is this a cool pic...it also shows the improvement in air movement from the surgery last fall.

Guillory Crawfish Boil

Oh, the places you'll go!

Park Life!

Did I mention how much they LOVE water!

Spring is Here!

I've meant to hop on here so many times to give little updates and it always seems that time runs out or I'm just too exhausted by the end of the day. The boys have been enjoying these warmer days...SUNSHINE is just wonderful! I really think it is the best medicine (along with all the laughter that usually accompanies being outside)! Carson and Kellen have become quite the masters of their scooters and bikes...sometimes to the point that I just can't watch because I envision all the broken bones and busted mouths that could happen at any moment. But they are boys through and through...whether it's the constant wrestling, playing in the mud, finding rocks, or being crazy kids on their various wheeled toys : ) Over the past few months, our normal routine has been interspersed with a couple visits from friends, trips to see Ellie & John (Sarah's newest child), holidays, and fun with family & friends ALONG with a few reminders of how God has truly worked miracles in our life.

1.   A little while ago, one of my good friends called to see what I found most beneficial while the boys were in the NICU (she was wondering because she had a friend who just had a premie and was going to be in the NICU for awhile)...as I was contemplating those first few months & what helped us, I was overwhelmed with GRATITUDE for Preston, our family, and ALL of you who journeyed with us, finding ways to help or just covering us in prayer! Because HUMAN BEINGS were at the top of my list and the support you all provided. Of course my faith in Jesus was up there too (which has grown exponentially since that time - simply because it was that or sink). God worked through all of you...you were his hands & feet & heart. I think back on that time in the hospital when stress should have been through the roof & I just remember so much PEACE! Now, THAT can only be explained through the peace only God can give.

and

2.   Earlier this month, Carson had a couple routine follow ups with doctors in STL (endocrinology and gastroenterology)...so we made the trip to Cardinal Glennon. After four years, the site of that hospital still brings a flood of memories & emotions but also HOPE! Carson made it through his appointments with flying colors (with many comments on how well he is doing) and then we headed to see one of Carson & Kellen's primary nurses (from their NICU days) that happened to be working that day...on the way to see her, we just so happened to see two of the main surgeons in the hallway that helped deliver the boys & remove the teratoma. God wanted us to see these two surgeons, I'm sure...after FOUR years, they still remember Carson (& Kellen) and so many details of his case. These doctors haven't even seen Carson in probably two years or more, and even though they have had probably thousands of patients since then, they still remember Carson...WHY?!? Because he had a freakin' HUGE teratoma...but also because his case could have gone totally different..because his case is miraculous! In fact, one of them even said, "I don't think you all really understand how close we were to losing Carson"..."kids don't do that well on ECMO coming out of surgery"..."you don't want to put kids on ECMO right after surgery because of the bleed out risk." God is alive, he is SO alive in this world, if we only have eyes to see, ears to hear, and hearts to believe. I'm so thankful that Carson's story wasn't and isn't over...the suffering is hard but we have him here with us! We will persevere...

And we will one day go back to Cardinal Glennon trach & g-button free (God willing)!!

With Ms. Christi...one of our favorites still!

We did get Carson's next cluster of surgeries scheduled in Cincinnati...he will be having a bronchoscopy May 4th to double check that nothing has changed in his airway and then assuming it hasn't, May 6th will be another BIG reconstruction! The plan is to move his trach site down some and then reconstruct the area at the level of his current trach. This MAY involve another rib graft {Ouch!} and will definitely require another stent to be placed inside his airway to allow healing for ~10 days. The stent will then be removed May 16th. Carson will need to be in the hospital for close to a week after the May 6th reconstruction. We pray every night for healing of Carson's airway but also for guidance for the doctors' thought processes and skilled hands. The surgery procedure is so far over my head (partially because I don't WANT to know what is going to be done to Carson) that I really just pray for the doctors to make the best decisions and for the many details that I can't even name.

Update on Carson's feeding:   Carson only lost a 1/2 pound but has been maintaining his weight since January, even with the new changes of allowing him more control over the amount of food he eats by mouth. I have my okay days, my better days, and plain awful meals where I lose my patient calm {on the outside} self...but all in all, I think it has been good for all of us. Carson is eating a lot more and a bigger variety of table foods. I believe simply because he actually feels hunger at times (even if he doesn't know it)! Through these past couple months, Preston and I both agree that the next step would be to cut out his tube feeding completely because we still aren't sure he fully grasps the connection between eating, satiety, and hunger...AND how could he?!? Nothing is normal about being tube fed your entire life, he has never known any different. We WOULD continue on with this step but with surgery being about a month away, we will shift gears a bit to make sure Carson's nutrition is at its optimal level going into another big surgery.

Again, thank you for all your prayers & love!! I don't think I'll ever be able to put into the words the gratitude we feel.

First time meeting their new cousin, John Joseph...instant love!

At their first big concert...these boys LOVE their music!

Doing what they do best...acting goofy!

The boys asked, "When are your friends coming back? We had fun!"

Waiting for the Easter Bunny with Ellie

One of several egg hunts this year!

Easter Sunday...the boys later recounted for us, "Jesus died, Mary cried, then an angel came and said, Don't be afraid"

Always have to have a 'silly one'!

Nothing better than DIRT!

Their first coach...Coach Dad!  They are going to play Tball this summer : )