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!

Rescheduled...waiting for that perfect time

Well, we have rescheduled again.

Carson feels okay but is not at his best (& that's what we are wanting for this surgery) and I DEFINITELY didn't want to put him through the anesthesia process only to reschedule anyway. We are now down for February 15th...I don't have a lot of hope for February but we wanted to give it a shot. February will be our last attempt to have Dr. Cotton there for the surgery and then also for the follow up (6 months later) when the t tube will be removed. He retires the beginning of September.

Lots of prayers that Carson is healthy and feeling perfect at that point. But even more for his peace of mind and guidance for all of us. I think it will be a good thing to have the surgery behind us. Carson has a fair amount of anxiety about this surgery in particular...he knows it requires more, that it is a 'bigger' surgery and that he'll most likely have a t tube afterwards. He does not remember the t tube from last time. It gets harder as he gets older...

This extra time has allowed us a chance to talk about fear, anxiety, and how to deal with it. And that God is ALWAYS with us and will watch over us!

Do not 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

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

Joshua 1:9

Happy New Year to everyone!! Praying for health, joy, love, and making the most of every moment this coming year!

Oh, the waiting...

Well, we are one week out from the rescheduled surgery (January 4th)...and I'm pretty sure Carson has the cold now that Brody and I had last week. Ugh! We were so careful to avoid germs and lots of people for the past week even with the holidays but such is life. It is nearly impossible to keep Brody out of Carson and Kellen's faces and vice versa. We have not cancelled surgery yet but after the last trip, Preston and I don't plan to go if Carson is not 100%. So prayers for guidance and health please as we wait (& trust) for the perfect timing of this surgery.

While I am on here, I have to share a sweet story. I was in my bathroom on Christmas Eve and could hear Kellen and Carson talking in the other room. Kellen hollered at Carson and then I heard Kellen go on to tell Carson, "Carson, I am so glad you are alive. Who else would I play/do all these legos with?""I am so glad that thing [teratoma] didn't make you die."
My heart melted and I was kinda in shock...it's not like these boys talk about their emotions much!

And, as am I...I am so glad Carson [& Kellen] are alive! We hope you all had a wonderful Christmas full of love...and joy...and hope!

Wait for the LORD; be strong and take heart and wait for the LORD.

Psalm 27:14

Back home.

I didn't make it on here last night...sleep got the best of me. We are back home...things didn't go as planned.

But when things don't go as planned...get ice cream!!

When they doctors did the scope (at the beginning of surgery), they said his upper airway was just a little swollen/inflamed and they want it to be at its best before proceeding so we’ve rescheduled for January. January 4th actually. It was disappointing to say the least but also an answer to prayer that they took a look and had Carson’s best interest in mind. The worst part is Carson had to go through the anesthesia process which causes the most anxiety for him...especially this time. But he bounced right back in true Carson form!

Part of that big smile is because he knew Uncle James would be jealous of his raspberry ice cream : )

It is hard to figure out [in fact I can't] why we had to put Carson through the whole anesthesia process when it is traumatic for him. I prayed (along with so many others) for clear direction and all the signs pointed towards going. Although I knew he wasn't at his absolute best, I thought he was likely good enough. So while I can't figure it out and it hurts me to see Carson have to go through unnecessary unpleasantries, we will continue to trust that it wasn't all in vain...after all, understanding doesn't always bring peace. We know this is all part of God's plan. We did get some clarification from the doctors on what their plan is and it was nice to hear Dr. Cotton say...'there is just a little bit more that needs to be done' [before the trach can come out].

We continue to hold onto hope and are praying that January 4th is the day!! We will have several weeks out of school so maybe Carson will be feeling GREAT!

For my thoughts are not your thoughts, neither are your ways my ways, declares the Lord. As the heavens are higher than the earth, so are my ways higher than your ways and my thoughts than your thoughts.

Isaiah 55:8-9