So, Carson…our brave, little fighter that just goes with the
flow, never gets in a hurry and takes life as it comes. He agreed that he would
have surgery [to get his trach out so he can go underwater]. He doesn’t want another
surgery anymore than I want him to and yet, he’ll do it (& hopefully his
smile will return quickly). He is scheduled for a supraglottal reconstruction
(about 6 hours), December 7th with a 10 day hospital stay expected
afterwards. Prayers we are healthy then!
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| That smile <3 |
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| At magician's kit at Ronald McDonald House. How can you help but smile!!! |
I’m not sure where to even start…the news from Cincinnati
was disappointing to me on many different levels. Not that I really expected
him to get his trach out right now, I wasn’t expecting the need for another
major surgery. In fact, I really thought we were done with major surgeries,
maybe time was needed to allow more growth but not another big surgery. So,
that was the first blow. Then, they told us he would need a t-tube for six
months following surgery…and all the horrors of the last time he had a t tube
(mainly the time in the hospital) came flooding back. It was definitely one of
the hardest hospital stays for me…to see Carson in pain and then to have to do
bicarb (a necessary thing) and cause more discomfort to him, all while holding
him down is more than I care to remember or have to relive. Then, to know he
will only be able to whisper and we will need tube feedings again (something he
has worked so hard to get rid of) just hurt my heart a little more. And it
continued, this next surgery is really the last shot at getting his trach out and
there are no guarantees that this surgery will even work. That may be the
hardest to swallow. There are no guarantees. I’ve NEVER thought he would have
his trach for life. In fact, the doctors thought it would be out a year or more
ago.
I cried many quiet tears on the way home from Cincinnati
[and some since then & I’m sure there will be more], at the unfairness of
it all, at the pain Carson will have to endure [AGAIN], the frustration that
I’m sure will come with only being able to whisper, some in anger that a trach
free life is still not in God’s plan for Carson at this point and just the
simple fact that the journey God has for his life is SO dang hard!
BUT…
Sometimes it’s just necessary to face your fears and try to
accept them. My fear…Carson will always have his trach…that he will not get to
go underwater like he wants. And while I can work through that fear and I see
Carson right now and he is healthy and happy WITH a trach…AND I can find a ton
of blessings in this past trip…sometimes, it just sucks because the outcome at
this point was not what I wanted for Carson and frankly, God’s plan for
Carson’s life could very well include a trach forever. It’s HARD and accepting
those possibilities and putting my full trust in God’s plan is an ongoing
process.
But I do want to share some of the answered prayers and
blessings of this past trip…
1.
Carson WAS healthy!!! Woohoo!
2.
Rain was forecasted the whole way up to
Cincinnati but we had dry spells at the two places we wanted to stop…the skate
park in Paducah and the walking bridge in Louisville.
3.
Carson made it through the sleep study and
anesthesia for the scope with very little anxiety and no tears.
4.
Again, we had rain most of the time we were
there but there was a break on the day we needed it to go to the zoo! (We got
to see the star of the zoo…a baby hippo named Fiona)
5.
During the scope, his airway reflected his
health and his lungs looked great! (giving the doctors a good look at his
airway)
6.
The doctors spent TIME with us afterwards to answer
questions and we met the doctor that will be taking over for Dr. Cotton when he
retires. (Preston and I both liked him.)
7.
They have a plan for Carson and the doctors are
optimistic that it will be successful. [Side note: the areas of the past two
reconstructions look great!]
8.
On the way home, our tire started losing air
about an hour and a half from home but after airing it up, we were able to make
it home without needing to change a tire. Praise Hands! [especially when it is
midnight]
So, thank you for your prayers, so many were answered!!!
They lift us up and carry us when we are feeling low. God is working…he always
is!
A couple things God has put in my path, at just the right
time, when I needed it the most…
I turned on Pandora the day after returning from Cincinnati (totally
random songs except you can pick the genre) and the FIRST two songs
I Have This Hope by Tenth Avenue
North (already one of my favs)
As I walk this great unknown
Questions come and questions go
Was there purpose for the pain?
Did I cry these tears in vain?
Questions come and questions go
Was there purpose for the pain?
Did I cry these tears in vain?
I don't want to live in fear
I want to trust that You are near
Trust Your grace can be seen
In both triumph and tragedy
I want to trust that You are near
Trust Your grace can be seen
In both triumph and tragedy
I have this hope
In the depth of my soul
In the flood or the fire
You're with me and You won't let go
In the depth of my soul
In the flood or the fire
You're with me and You won't let go
Just Be Held by Casting Crowns
So when you're on your
knees and answers seem so far away
You're not alone, stop holding on and just be held
Your world's not falling apart, it's falling into place
I'm on the throne, stop holding on and just be held
You're not alone, stop holding on and just be held
Your world's not falling apart, it's falling into place
I'm on the throne, stop holding on and just be held
Perspective
changers
1.
The
day we got home, after all the rain, the afternoon ended up being beautiful so
I took the boys and their bikes to the park. I left we two happy boys that were
soaked from riding through the puddles!
Reminder:
Carson is happy & healthy WITH a trach.
2.
There
was a terrible tragedy in Dexter and a young husband/dad was killed.
Reminder: The often overlooked, yet simple
and biggest blessing … I HAVE Carson (& Preston).
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And last, I saw Aunt Vickie just today (she hadn’t heard the
report from Cincinnati yet). As I was telling her about some of the
disappointments, specifically that there are no guarantees that this surgery
will be successful in getting the trach out, she said, “Well, that’s where our
prayers come in!” And that’s so true, where the medical expertise stops, we can
see prayers & God’s handiwork the most! (Need I remind myself of Carson and
Kellen’s beginnings!)
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| This was given to me after C & K were born & sits in their room. So true! “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 5:3-5 |
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| Paducah skate park! |
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| Big Four Bridge in Louisville |
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| Cincinnati Zoo |
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| Sleep study ready...there's a rockstar! |
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| This picture <3 <3 <3 |
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| Elephant Rocks the weekend after we got home |
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