Next trip in 6 months

It was a quick trip...we got back home Friday evening. The news was about what we expected (maybe not what I hoped for but what we expected)...his surgical site is healing well but there is still some swelling from the previous surgery. This just means he needs more time and that hopefully this next time the swelling will be totally gone and we can move forward with the decannulation (aka getting the trach out) process which will most likely include a capped sleep study.

We will return in 6 months for another MLB ('scope'). They did say that his airway was sized at 5.5 mm which is improved from 5.0mm. This means we are moving in the right direction. (They said 6.0 mm is sufficient -although not normal- for an adult.) Dr. Cotton will be retired by our next appointment but we did get a chance to tell him how much we appreciate all he has done for Carson (& for kids in general). He normally just gives elbow bumps (avoiding germs) but this time Preston got a handshake and I got a hug from him! <3 I would have loved for Dr. Cotton to see Carson get his trach out but he assured us he would keep up with Carson's case when he has breakfast with Dr. Smith. : )

The miracle of this trip for me was in the anesthesia induction process. Like I said, this is the part that causes Carson the most anxiety. We had talked about the different possibilities with Carson beforehand and he chose to try an IV so he didn't have the air hooked up to his trach. My prayer was for the best person to put in the IV (last time we tried this, I just remember it took two tries, there were tears, and there seemed to be alot of blood that added to the traumatic experience). Anyway, Christine put the IV in and she did it in about 5 seconds and on the first try! Praise the Lord....she was my answered prayer(& I told her)!!! Carson was just a little nervous since he wasn't sure what it was like with an IV but NOTHING like normal. No crying, no covering up his trach so we can't hook the air up and no throwing up from nerves. Seriously, I was so happy! Hopefully, it means a whole new experience for future visits!

Hopefully we will get to return in 6 months and C will be healthy [that will be right in the middle of flu season again]. Thank you all for the many prayers!!

One other prayer request...Carson's nurse/aide at school from the past two years is not going to be able to be his nurse again this year so he will have a new nurse (or aide) at school. Praying for a wonderful person that is trainable, calm, and a good problem solver and also fits in well with the other staff at school.

Headed back to Cincinnati

It's been THREE months since our last trip...kinda hard to believe and still reveling in the fact we never needed the t-tube <3 We have been busy this summer. Carson and Kellen played baseball, went to their first VBS (they loved it!), went to basketball camp, and have taken a couple trips (one to the beach, one to Nana & Poppy's by themselves, & several other shorter trips)!

We have definitely seen an improvement since surgery (when we could tell that there was alot of swelling from the surgery itself...which is expected). Neither Preston or I are expecting them to say ALL of the swelling is gone and they are ready to move forward with the decannulation process (but our God is a God of miracles so who knows!!). We do hope they can get a look at the surgery site and see how healing is progressing. This trip should just include a MLB (aka scope). It should be a short trip. We will head up tomorrow (Thursday) morning and the scope will be on Friday at 7:30 am ET.

Prayers for safety are appreciated and probably more than anything that Carson may have some out of the ordinary peace. He is old enough and has had the anesthesia process frequently enough that the memories don't fade and the anxiety just builds on itself. Now, when we say we are going to Cincinnati, he says "I don't want to do it [the anesthesia part]." Ugh...it breaks my heart. We talk through it. He really doesn't like when they hook the air up to his trach...it feels weird and really causes him some anxiety. We have talked about other options...getting an IV in preop or to try using a mask (& leave his trach capped). We've tried an anti-anxiety medication before but it never has really helped. So prayers for Carson's decision on method of anesthesia and for something to click to help keep him calm. I am praying for a miracle that the swelling might be gone (but like I said, we aren't really expecting that news). This trip should tell us what the next step is...a little more waiting or steps to decannulation (removing his trach).

Sending our love to all of you!

Baseball nights with their fans!

One of my favorite sights

Pre-nerf gun war (happy faces didn't last long)

Their happy place!! And mine too!

Blueberry pickin'

So much fun on their new swing (at the expense of some poison ivy)

They love Mimi & Papa's pool! I included this because my prayer is for Carson to be able to get in water without having to be EXTRA cautious the water doesn't get up by his stoma. About the only time we really hear Carson say "I wish I didn't have a trach." is related to water play.

Filling in (A LOT of) details PLUS an update on C

Okay, know that we are almost a month out...I'm back. I know so many people have had questions about what they actually did, does Carson still have his trach, how is he, etc? And I am so sorry it has taken me so long, I know everyone has their life to live (& mine got really busy with the end of the year activities) but it means SO much to us knowing so many still pray for us on a daily basis and want to know how Carson is doing. [Warning: this got REALLY long]

So first, let me rewind to the week before Carson's surgery. As we approach a surgery date (especially a BIG surgery), my ears become hyperalert...I hear EVERY sniffle, sneeze, & cough, I can feel myself preparing emotionally for the date, and often I can feel the physical signs of stress increase. As we approached this date in April, I felt really good. Carson had been healthy and we were out of school the Thursday before surgery for Easter so the exposure to germs was minimized.  But on Easter night, Carson had alot more coughing during the night [which isn't normal] and then in the following days I noticed more sniffles. This isn't all that surprising because of the time of year, trees budding, farmers starting to plant and prepare their crops but ANY drainage [cold or allergy related] will likely be running right over the area they will be working on. So, surgery was Thursday and the Tuesday before Carson woke up and didn't feel quite right. I kinda just pushed it off [you know, if I don't acknowledge it, it isn't true. Ha!] and kept on but then decided to check his temperature. He had a fever....100.5!!!! What?!? I thought, you have to be kidding me God! Again?!? We have to reschedule AGAIN!! I ended up calling Cincinnati later that day just to run all the symptoms by them (fever, runny nose, a little more coughing) and get their opinion. They said, it wasn't a deal breaker and to plan to still come. A fever to cancel surgery is a temperature greater than 101 but I'm still starting to doubt that Carson is going to have the surgery. Remember, we are shooting for a 100% healthy child!

So, I continue on with packing Preston, Carson, Brody, and I for a 10 day stay in Cincinnati and Kellen for a stay with Mimi & Papa while we are gone because he still has school. We make our journey up to Cincinnati which was a wonderful trip as far as they go...we stopped at our favorite skate park [in Paducah] and then at one of our favorite spots to play in Louisville and arrived at the Ronald McDonald house in time to give Carson (& Brody) some time to play before it was bedtime [all the while, staying ahead of a storm system that was bringing rain!]. We get to bed and I'm praying throughout the night for peace & calm, for a clear answer as to whether to have the surgery, and especially that if Carson is going to have to go through anesthesia [the part that causes the most anxiety for him] that he will actually have the big surgery. We have a fairly good night but when Carson wakes up [now the morning of surgery], Preston says, I think he feels warm. NO way! This has to be a joke!! But hey, maybe this is my CLEAR answer to prayer. I take his temperature & watch the number climb (remember 101 is a NO-GO). It stops at 100.8!!!! Well, not enough to cancel but definitely a fever, definitely not normal, definitely not 100% healthy!

I'm deflated but we try to continue on as normal as possible (so not to cause any extra angst for Carson), I don't really even mention the fever, not even to my mom who is with us, we just continue on. We head over to the hospital...I don't even take anything to occupy my time because at this point, I am SURE we will either cancel prior to surgery or they will take him back only to tell us after looking, 'His airway is irritated. We need to reschedule.' We go through pre-op procedures (his temperature was 99) and head back to the induction room (I am ALWAYS so thankful Cincinnati is set up to allow parents back with their child until they go to sleep). Carson did great until he saw the induction room (this is the room where anesthesia is administered to put him to sleep)...then we had nerves, tears, and 'I don't want to's'. We talked through it outside the room and Carson agreed to go in but he still didn't want to. We had a bit of a fight before he let us hook up the anesthesia gas to his trach (that's the part he doesn't like because it feels 'funny') but he got it done. And after he was 'asleep', Preston and I went to the waiting room to wait. Preston was more optimistic that they would do the surgery but I basically was planning to head right back home that day bc I was certain his airway wouldn't look good, definitely not good enough for as big of surgery as was planned!

Sure enough, they call our name in 30 minutes or less from the waiting room. This means either the doctors are ready to talk to you or they have an update from the OR. I walk up to the desk ready to go sit in the consultation room to hear that we need to reschedule, but instead, I'm told to pick up the phone because they have an update from the OR.  The first words from Dr. Smith (the surgeon taking over Carson's case from Dr. Cotton) totally had me in shock, "We are going to go forward with the surgery. This is the best I've seen Carson's airway look in 2.5 years!" I am in shock but continue to listen. He goes on to explain that he and Dr. Cotton believe we still need some surgical intervention to improve his airway especially when he is sick but MUCH less will likely be needed. They are hoping to not need a graft or t-tube or stent. [These are all things to open up or help hold the airway open while the surgical site heals.] We go sit back down and I'm instantly overcome with tears, tears of relief, happy tears, and a few tears of doubt, wondering whether we would have needed any surgery at all if I would have been a little more patient and waited to have the surgery until later. But we are elated and get to send out one of the best texts since coming to Cincinnati over 6 years ago. [That his airway looks good and much less surgical intervention is needed!]

This is how we FELT after getting the news (note: this picture was taken the night before...after successfully making a farting noise with his hand under his armpit....Boys...geez!)

We still were holding our breath a little until the surgery was actually done because our experience tells us that you have no idea what they will actually do until it is all said and done! But our high continued when we talked with the doctors afterwards. Indeed, they did NOT need any grafts, any stents, or a t-tube!!! This was amazing!!! The pictures they showed us of pre & post surgery showed notable improvement! They didn't use the term 'miracle' but that's what it was! I know I didn't have a 100% healthy kid going into surgery on his airway yet his airway looked the best it had in 2.5 years. And last September when we were here, (he was healthy & no inflammation was noted in his airway) they said the area would never improve [not with time or growth] unless we had the big surgery. Guys, I'm still kind of in shock when I talk about this miracle because I had resigned myself to the fact that Carson's airway might be 'healed' and that we may get his trach out eventually but it was going to be the hard way...with alot of surgery...alot of pain and suffering. Yes, he still needed an invasive surgery but it was SO MUCH less than was expected.

I included this to try to give you an idea of the miracle...all you need to look at are the top two pictures (the one on the left is September 2018 & on the right was this trip BEFORE they did the surgery). That is his airway...there should be a black hole...the bigger the better. You can see that he basically had nothing in September when he was healthy versus this trip!

As I mentioned in an earlier post, this surgery did require about a 2" incision on his neck. They opened up his voice box partially and then did a vocal cord lateralization (actually the false cords just above the vocal cords). There was significant pain and discomfort for about the first 24 hours due to the neck incision & drain and a mistake with urinary catheter size which lead to inflammation and Carson not being able to empty his bladder. But after that, we saw a marked improvement in how Carson was feeling. We stayed for 3 nights (instead of the 7-10 day stay we were expecting). So, yes, he still has the same trach he had going into surgery. We will go back in July to have another MLB (scope) to assess the healing of his airway. At this point, it is a waiting game for the swelling & inflammation [caused from this surgery] to go down. Another, answer to prayer, that I thought was no longer a possibility, is that Dr. Cotton will still be there for the follow up since we did not need the t-tube.

Before surgery

After surgery (with one of his biggest fans!)

A day later...Brody's shirt says 'My Bro is My Hero.' So true!

In the first days after we got our 'miracle', I was elated, in disbelief/shock, but also felt some guilt. Guilt, I believe because we got this miracle that we had been praying for but somehow I felt like I didn't deserve it. Yes, I totally thought Carson deserved it but maybe not me. Do you know how many people pray for miracles or specific things and NEVER get the answer they are praying for? I've come to terms with the fact that God's ways are higher than mine and his timing is different than mine and some prayers will not be answered in the way we are hoping...BUT THEN I get an answer to MY prayer and I stand in shock! Why me? Why did I get an answer to my prayer when so many don't? I had to wrestle with those questions some but then I came to the conclusion that I just have to be thankful and to hopefully use all the energy that I would have put towards helping Carson and dealing with the extra stressors for good. I can pour it back into my kids or into helping other people. We witnessed a perfect example of God's timing being more perfect than ours...if we would have had surgery any of the other THREE times it was scheduled (December, January, or February) Carson would have likely had a MAJOR reconstruction and t-tube and all that entailed. But he was spared because the doctors were prudent and we did not try to push it when he was NOT ready. We saw God's healing power and Carson was spared SO MUCH suffering!

As I told several friends once we got home, not only did we receive this AH-mazing news in Cincinnati and that his recovery was so much easier but we were also given a present of SIX MONTHS! We went expecting to have a t-tube for six months
...that meant for six months, Carson would likely need tube feedings again [because it is very hard to eat with a t-tube] which is doable but just not as convenient and we are no longer used to.
...it meant for six months we would be doing unpleasant bicarbonate treatments twice a day (basically putting baking soda in your airway twice a day...ick!)
...it meant for six months, I wouldn't get to hear Carson's sweet voice but not only that, he would only be able to whisper for SIX months. Imagine, a 7 year old, that is used to having his voice, no longer having it...there would have likely been a lot of frustration which leads to anger & poor behavior.
GUYS, (I'm in tears as I type this)...not only did we get a miracle in Cincinnati, we got SIX months of our life as we now it back, a much more carefree summer, and a much more 'normal' life for a sweet 7 year old that has endured so much in his short life! THIS...was maybe what had me the most grateful! I never doubted that we could get through those six months [with God's help & the people He puts in our life] but those six months is what I was dreading the most. THANK YOU GOD that this time we were spared! I think I felt a little bit of what Abraham must have felt as he took Isaac up for sacrifice, trusting God but wondering how this was going to work out for good....then to feel the relief he must have felt when God spared Isaac.

Okay...this is SUPER long... sorry guys, there are just so many layers of this past trip. So much goodness! So...if you've made it this far, I wanted to give a brief update on how Carson is doing now. If you asked him, he'd say GREAT...probably couldn't even put a name to anything that is any different! And overall, I would agree. His incision is most totally healed on the outside but we have dealt with some differences/changes in behavior [mostly that he has less patience, so he becomes more easily frustrated/angered]...some of this is a common side effect of anesthesia & a hospitalization but I think it is also related to the healing process and having a little less energy. Also, there is still swelling in his airway from the surgery which makes breathing, in general, a little harder. I don't mean that Carson can tell it's harder but that more energy is expended just on breathing. I can tell that there is still some swelling because his breathing becomes louder (more labored), more quickly with exertion. This is all to be expected and I think we will know some of the internal swelling has gone down when this improves

. All in all, we are on the right track and still so grateful to be on the side of good news this time and for ALL of you that continue to prayer and care about Carson [& us]!!

Against all hope, Abraham in hope believed...yet he did not waver through unbelief regarding the promise of God, but was strengthened in his faith and gave glory to God, being fully persuaded that God had power to do what he had promised. Romans 4:18-21

'in hope, to believe'...This is just so beautiful and something I hope to live but know I fall short of sometimes.

And we boast in the hope of the glory of God. Not only so, but we also glory in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope.  And hope does not put us to shame, because God's love has been poured out into our hearts through the Holy Spirit, who has been given to us. Romans 5:2-5

This was just before heading home...it happened to be National Superhero day! And there is our superhero in the middle!!

Reunited with Kellen!!!!

Another bonus...Carson got to go back to school for the last week & a half and even was recognized for his good citizenship! Kellen also received an award...the Principal's award : )

Miracles!

As always, I meant to update sooner but haven't gotten to a computer. 

Carson had the surgery Thursday to my surprise but not only that, the doctor called from the OR during surgery to let us know they were going forward with surgery and he said "This is the BEST Carson's airway has looked in 2.5 years!" He went on to say that although it looked much more open he still felt some intervention was necessary but not a t-tube or a stent. When all was said and done they did a vocal cord lateralization on the right (plus a little more) through an incision. This is SO MUCH less invasive than they were planning with follow up care much less. So he still has the same size trach, we will follow up in three months. Dr. Cotton will still be here! More or less we will just have to see how long it takes for the swelling to dissipate (which is a little longer for Carson typically because alot of the lymph nodes and vessels on the right side were removed with the teratoma so long ago.) Right after the surgery, Dr. Cotton remembered my question from last September and made a point to tell me, "I feel very good that we will get his trach out eventually!" All. of . this. is maybe the best news we've had in a long time!!! We were over the moon...many happy tears were shed! 

Our excitement was dimmed for awhile because the first day/night were rough for Carson. Even though it was a much less invasive surgery, it was still surgery and still has a recovery time. He had a lot of pain at his neck incision and wasn't able to pee afterwards - even though he had a full bladder. They ended up having to cath him to relieve his bladder yesterday morning : ( so we were back to praying for pee (like we did 7+ years ago in the NICU). He did eventually go pee afterwards but it wasn't without alot of burning and pain. His neck pain improved A LOT after we re-situated his trach...they had it pulled to the side with the ties. We also were able to start Toradol for pain. As long as he is able to tolerate eating and get enough calories, we will be able to leave Sunday after they take out his neck drain.

I hope to get back on here soon and share the many layers of this trip and the way God worked.

As I've told many people, I know & believe God is good all the time - even in our low moments but it feels SO nice to be on the side of good news this time! Thank you for the many, many prayers!!!

"I remain confident of this: I will see the goodness of the Lord in the land of the living." Psalm 27:13 (even a little more confident now ; ) Haha!

Uncertain

We are here in Cincinnati. Surgery is scheduled for around 11am ET. Carson had been totally healthy until Monday, when he started sniffling with occasional coughs. Ugh...it was a big let down and sent us back into trying to make the best decision. I hate to put C through anesthesia and not get the surgery done but Cincinnati said to come on up and they will look which still requires anesthesia.. I’m not very hopeful because any drainage at all affects the area they are working on. Maybe I’ll be surprised. Prayers for the team and Carson’s peace of mind.

I’ll update tomorrow. Love to all!

'Holy Week'

I just wanted to send a quick update for those that check the blog or get the updates by email. As of now, (fingers and toes crossed, breath held, prayers being said) Carson is still on for surgery next week, Thursday, April 25th. He has been healthy with the exception of a couple colds the last couple months but Preston has a cold now...trying to keep his germs away from the boys and Brody's nose is & has been running for the past week. I know it is in God's timing, but I'd like to have it all behind us [if we are going to have to do it...which we are].

I watched a video this past week and it talked about wanting to just skip straight from Palm Sunday to Easter (to the happy times) but that there is a purpose for the dark times, in going THROUGH Holy Week, for Jesus...for humanity. It just really hit me, we all have 'Holy Weeks' in our life and for me, it's this coming week with Carson's surgery. I want to just skip over the surgery and the immediate recovery...heck I would kinda like to skip to when Carson no longer has a trach, but I know there is purpose and that growth comes out of the tough times. I wouldn't want to miss all the moments in between even though I would LOVE to skip the suffering.

I can't really think about what all is going to transpire in the surgery, it hurts my heart to think of Carson having to go through it all. I'm praying, first and foremost, for the most successful surgery possible (now and later on) but I'm also praying for the least invasive procedures...there is a possibility of up to two more rib grafts and a t tube placement for 6 months [all that's subject to change at the surgeons' discretion]. Prayers for clarity of thought and steady hands for the doctors and staff. Prayers for Carson's peace of mind going into surgery and through the anesthesia process and for his recovery. Prayers for all the other details of the trip and stay also. Kellen is staying home [with Preston's parents] for the first part at least, since school is still in session. My mom is coming with us to watch Brody & to be my emotional support : )

I cannot tell you how much it means to know we have all of you praying along with us! I am hopeful and trying to be as surrendered as possible to God's will.

"Do not be fear, I am with you. Do not be afraid for I am your God. I will strengthen you and help you, I will uphold you with my righteous right hand."

Isaiah 41:10

"I remain confident of this, I will see the goodness of the Lord in the land of the living. Wait for the Lord; be strong and take heart and wait for the Lord." 

Psalm 27:13-14

Still waiting...February was not the month

Well, we rescheduled surgery again. Now for April 25th. Again, Carson wasn't all that sick but he wasn't 100% either. I had some cultures done last Monday with his pediatrician just to give me as much information as possible going into surgery. They showed a common cold virus and a bacterial infection (even though he doesn't have many symptoms at all). When I called Cincinnati, the nurse practitioner told me, "Nope, we aren't doing this!" She said, we all want this to be his last surgery too and we aren't doing it until he is totally ready. She asked me why I had cultures done[because she didn't order them]...but said, that it was probably a good thing because it may have been what saved us another trip only to have it rescheduled anyway.

This is frustrating, of course, and means that while we still have hopes of Dr. Cotton being here for the surgery itself, he won't be here for the follow up and we still have this surgery hanging over our heads. But at the same time, I am thankful everyone has Carson's best interest at heart. It WILL happen at some point....not sure when, but I know God does. Hoping that the perfect day may be April 25th!

I think Carson has put his thoughts (& really mine) most simply. "I want my trach out, but I don't want to have surgery." And that's just it, I want to have this surgery behind us but I don't want him to have to go through ANY of the pain, anxiety, and suffering of it. I know God will walk right through it with us, but for now, we get back to living life. Now, we have Valentine's Day parties and a winter break coming up that won't include any surgery. So cheers to that!

"For I know the plans I have for you," declares the Lord. "Plans to prosper you and not to harm you, plans to give you hope and a future." Jeremiah 29:11

I really can't tell you all enough, how much it means to us to have so many praying for Carson (& us) and following along with his journey [STILL]. So many who check up on us still. We are beyond blessed to have so many in our corner! Love to all!