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!]
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| 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.
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| 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.
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| Before surgery |
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| After surgery (with one of his biggest fans!) |
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| 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
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| This was just before heading home...it happened to be National Superhero day! And there is our superhero in the middle!! |
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| Reunited with Kellen!!!! |
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| 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 : ) |
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