We made it home yesterday (a day earlier than expected) & this momma was happy to be home! Carson did well! The scope (on Friday) still showed some swelling at the prior surgical site which Dr. Cotton felt was to be expected. But because there was still some swelling...he wants to take a very slow, conservative approach. We will return in 6 months. I asked if it was really necessary to wait that long (Kindergarten was in my mind) and he was firm on waiting 6 months. However, he does not believe that further intervention will be needed (Thank you God!) So, Saturday night, Carson did a capping trial overnight. He did well with no oxygen desaturations and no drops in his heart rate with his trach capped. We will continue what we have been doing (capping during the day) for 3 months [I believe this is to allow most of the swelling to subside] and then cap day and night for 3 months before returning to Cincinnati. We haven't gone 6 months without a trip to Cincinnati in a couple years...so the break will be nice for Carson [& for us].
So, although, I have always prayed his trach would be out by Kindergarten...I am over the moon excited they he still thinks that the big surgeries are behind Carson. I think it was a good report overall! Thank you for the many many prayers, calls, texts, etc. We are so incredibly grateful!
Now, my prayer is we can make it until May 15th to deliver this baby...I've been more tired since the trip and have been having more Braxton Hicks contractions. We have an appointment tomorrow [Tuesday] and then hopefully next Monday will be a birthday!!
Monday, May 8, 2017
Wednesday, May 3, 2017
We will be headed to Cincinnati!
Thank you all for your prayers! Today was a LONG day...started with a call this morning that surgery needed to be rescheduled because of insurance authorization. Then after explaining that I am about to have a baby and that we need to get this done, they agreed to call one more time. In the interim, I was making phone calls that I could. Long story, short, after about 5 hours [& multiple phone calls] I got a call from Cincinnati saying it was a go for Friday still.
So, we are packed and ready to leave tomorrow (Thursday). The bronchoscopy is scheduled for 7:30 am ET.
Here are some pictures from the last several weeks...
So, we are packed and ready to leave tomorrow (Thursday). The bronchoscopy is scheduled for 7:30 am ET.
Here are some pictures from the last several weeks...
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| My handsome men! |
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| Matching hospital wrist bands...I had an MRI & Carson had a follow up appt at Cardinal Glennon |
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| Look at that proud smile! It's hard to see but he has a butterfly on his finger! |
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| And Carson's roly poly friend : ) |
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| Riding rides with Ellie at Thunder over Louisville |
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| The whole fam got together in Louisville for the Kentucky Derby kickoff event [Thunder over Louisville]! |
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| The firework show was AH-mazing! |
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| At Thursday School [preschool] graduation! |
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| Fun with cousins! |
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| Doesn't get much better than that! |
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| Early morning hugs for 'pumpkin'! |
Tuesday, May 2, 2017
One last trip to Cincinnati before 'Pumpkin' arrives
Okay, I wanted to hop on here quick and put out some prayer requests. I have lots of pictures to share but I'll try to do that tomorrow.
We are scheduled to leave for Cincinnati Thursday for a scope on Friday (May 5th) and then a possible capping trial over the weekend.
So, first prayer request...there was a slight change in Carson's insurance that will likely require reauthorization for the surgery. I did not get the new insurance cards and the new plan did not go into effect until May 1st so that leaves VERY little time to obtain authorization. Praying for a miracle, that somehow authorization is obtained and we can go forward with this step.
Second prayer request...we are 13 days from delivering 'pumpkin' (The third Clark brother, we still don't have a name : \). So, we are asking for prayer that he stays put during this trip to Cincinnati so we can make it back home before the planned C-section on May 15th. But also for peace of mind for me and guidance if there is some reason I should not be making this trip to Cincinnati.
I know God has always taken care of us before, so I'm truly trying to trust, listen, and realize that God is in control and His plans are always good!
Update on Carson: His voice has returned and the stridor (noisy breathing) is improved but still evident with exertion. I still feel like his voice may be a little softer since the bout of laryngitis but it is SO hard to tell and compare between weeks. We don't really know what to expect with this bronchoscopy...hoping that things look good and that there is some explanation for the stridor we are hearing with exertion. So, as always, we are praying for comfort for Carson through this whole visit, an accurate assessment, and miracles in healing of Carson's airway/voice.
Thank you all for the many, many prayers and all your love!
We are scheduled to leave for Cincinnati Thursday for a scope on Friday (May 5th) and then a possible capping trial over the weekend.
So, first prayer request...there was a slight change in Carson's insurance that will likely require reauthorization for the surgery. I did not get the new insurance cards and the new plan did not go into effect until May 1st so that leaves VERY little time to obtain authorization. Praying for a miracle, that somehow authorization is obtained and we can go forward with this step.
Second prayer request...we are 13 days from delivering 'pumpkin' (The third Clark brother, we still don't have a name : \). So, we are asking for prayer that he stays put during this trip to Cincinnati so we can make it back home before the planned C-section on May 15th. But also for peace of mind for me and guidance if there is some reason I should not be making this trip to Cincinnati.
I know God has always taken care of us before, so I'm truly trying to trust, listen, and realize that God is in control and His plans are always good!
Update on Carson: His voice has returned and the stridor (noisy breathing) is improved but still evident with exertion. I still feel like his voice may be a little softer since the bout of laryngitis but it is SO hard to tell and compare between weeks. We don't really know what to expect with this bronchoscopy...hoping that things look good and that there is some explanation for the stridor we are hearing with exertion. So, as always, we are praying for comfort for Carson through this whole visit, an accurate assessment, and miracles in healing of Carson's airway/voice.
Thank you all for the many, many prayers and all your love!
Thursday, March 23, 2017
Wanted: Answers & Patience
I've been wanting to get on here (now that we are 4 weeks out from surgery) and be able to say that we see huge improvements in the stridor (noisy breathing) and feel very positive about the success of this last surgery...instead, I don't really even know what to write. Something is off, yet I don't know what it is...when I don't have my NORMAL to compare to, it puts me at a loss. And I'm that person that can't stand unanswered questions...answers I'm not really sure anyone can give me right now.
What I do know...Carson has lost his voice in the last week (first time he has ever lost his voice in 5 years)...just in time for Kindergarten screening tomorrow...great! Ha! When he has his cap on, you can hear each breath (on inhale & exhale)...it's different than the stridor on exertion before this surgery but it is audible when you are next to him and it becomes more pronounced with exertion, whether he is just dry or there is an obstruction. I have no idea! And he does have extra secretions right now (whether its allergies or a virus...I'm not sure, but its that time of the year for either).
I called Cincinnati this morning...hoping for some answers as to why he lost his voice or what the breathy sound could be or hoping for some ideas of what to expect but didn't get any that satisfied me. I'm waffling between further advocating for my child and wanting answers NOW and trying to be patient and wait for a new normal to be established. Carson is such a trooper and in some ways, it makes it hard for me because he will push through a lot of pain, discomfort, or just different feelings because he always has! Yet, I wish he could just tell me is it hard/harder to breathe with the cap on...he likes wearing his cap but I don't want him to if it makes it harder for him to breathe.
What I hate is that these differences and concerns are making me more impatient and short in general...so then every little misbehavior, inconvenience seems a much bigger deal. Blah, Blah, Blah...I'm not sure any of this makes sense and I don't know if it should because all these feelings and noticing little differences come from having Carson for 5 years, knowing a whole lot more about trachs than I ever thought I would and knowing Carson's normal only to have it changed on a regular basis recently with surgeries, adjustments, etc.
I guess I'm just asking for prayer for complete healing for Carson but also for guidance and intuition for Preston and I as we navigate the next steps in Carson's journey...when to push and when to be patient.
I just heard a song by Tenth Ave North that hit home for me..."I Have This Hope"
P.S. Just so you know, these changes haven't slowed Carson down much (although not having his voice can be frustrating at times)...they've had a blast riding their scooters, way too fast, all over the place. We've loved the nicer days recently!
What I do know...Carson has lost his voice in the last week (first time he has ever lost his voice in 5 years)...just in time for Kindergarten screening tomorrow...great! Ha! When he has his cap on, you can hear each breath (on inhale & exhale)...it's different than the stridor on exertion before this surgery but it is audible when you are next to him and it becomes more pronounced with exertion, whether he is just dry or there is an obstruction. I have no idea! And he does have extra secretions right now (whether its allergies or a virus...I'm not sure, but its that time of the year for either).
I called Cincinnati this morning...hoping for some answers as to why he lost his voice or what the breathy sound could be or hoping for some ideas of what to expect but didn't get any that satisfied me. I'm waffling between further advocating for my child and wanting answers NOW and trying to be patient and wait for a new normal to be established. Carson is such a trooper and in some ways, it makes it hard for me because he will push through a lot of pain, discomfort, or just different feelings because he always has! Yet, I wish he could just tell me is it hard/harder to breathe with the cap on...he likes wearing his cap but I don't want him to if it makes it harder for him to breathe.
What I hate is that these differences and concerns are making me more impatient and short in general...so then every little misbehavior, inconvenience seems a much bigger deal. Blah, Blah, Blah...I'm not sure any of this makes sense and I don't know if it should because all these feelings and noticing little differences come from having Carson for 5 years, knowing a whole lot more about trachs than I ever thought I would and knowing Carson's normal only to have it changed on a regular basis recently with surgeries, adjustments, etc.
I guess I'm just asking for prayer for complete healing for Carson but also for guidance and intuition for Preston and I as we navigate the next steps in Carson's journey...when to push and when to be patient.
I just heard a song by Tenth Ave North that hit home for me..."I Have This Hope"
As I walk this great unknown
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 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
But sometimes my faith feels thin
Like the night will never end
Will You catch every tear
Or will You just leave me here?
But 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
Monday, February 27, 2017
We are home & Carson is back at it!
Surgery went well and we actually got to come back home last Friday. It was a long few days but was so nice (as always) to be back home. While Carson is still healing and there is some swelling...he is back to acting like his normal, happy, active self! Thank you for the many, many prayers!
So, on the surgery...the doctors felt confident in the surgery and said they were able to do all that they were hoping but time will tell because there was a lot of swelling (to be expected). We will have to wait for the swelling to resolve before the true results are seen. Great news...no stent was needed! So Carson is able to talk and we won't have to make any follow up trips to have the stent removed, etc. Actually, we won't go back for three months (and actually the next date is already set, Cinco de Mayo). The plan...in three months, have another scope and trial capping (plugging his trach) day and night for 48 hours. If that goes well, cap day and night for a couple months and then decannulate in July/August!!! Only scheduling hiccup...the latest that our next baby will be here is May 22nd (17 days after that May 5th appointment). But...we know that God has everything already planned out, so leaving all the details in his capable hands.
Carson did well with the surgery, as he gets older, he seems to get a little more nervous but he handled it all pretty well. There was a fair amount of pain initially when he coughed or moved his head (they had to make an incision on the left side of his neck) but that seemed to improve after a day or two also. Carson is truly our hero....he takes the cards he's dealt in stride and just keeps on going!
One of the verses in Jesus Calling, the day of his surgery, is one of my favorites and is just so true regarding Carson. He does it without knowing it but by just being him.
Thank you again for the many prayers that have been said and will be said for Carson and our family. There are many details in the coming months with [hopefully] the last of Carson's surgeries before his trach can come out, for timing of our next precious boy's birth, with Kindergarten summer school (May-June), and the beginning of Kindergarten in August but I'm so thankful for the many answered prayers already!
So, on the surgery...the doctors felt confident in the surgery and said they were able to do all that they were hoping but time will tell because there was a lot of swelling (to be expected). We will have to wait for the swelling to resolve before the true results are seen. Great news...no stent was needed! So Carson is able to talk and we won't have to make any follow up trips to have the stent removed, etc. Actually, we won't go back for three months (and actually the next date is already set, Cinco de Mayo). The plan...in three months, have another scope and trial capping (plugging his trach) day and night for 48 hours. If that goes well, cap day and night for a couple months and then decannulate in July/August!!! Only scheduling hiccup...the latest that our next baby will be here is May 22nd (17 days after that May 5th appointment). But...we know that God has everything already planned out, so leaving all the details in his capable hands.
Carson did well with the surgery, as he gets older, he seems to get a little more nervous but he handled it all pretty well. There was a fair amount of pain initially when he coughed or moved his head (they had to make an incision on the left side of his neck) but that seemed to improve after a day or two also. Carson is truly our hero....he takes the cards he's dealt in stride and just keeps on going!
One of the verses in Jesus Calling, the day of his surgery, is one of my favorites and is just so true regarding Carson. He does it without knowing it but by just being him.
Therefore, since we are surrounded by such a great cloud of witnesses, let us throw off everything that hinders and the sin that so easily entangles. And let us run with perseverance the race marked out for us, fixing our eyes on Jesus, the pioneer and perfecter of faith. For the joy set before him he endured the cross, scorning its shame, and sat down at the right hand of the throne of God.
Hebrew 12:1-2
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| This was one of his first smiles after surgery : ) Precious, precious boy (with his bunny he got in pre op)! |
Tuesday, February 21, 2017
February 23rd is here
This is going to be a short post because I am still working on packing but we are heading to Cincinnati tomorrow (Wednesday) for surgery that is scheduled for Thursday...I think I'm still holding my breath that it is all going to go through. Surgery is scheduled to begin at 7:30 am ET & they have the OR blocked for 4 hours for his case.
This is the plan for the surgery (from a prior post):
They will be doing a supraglottalplasty (basically removing tissue by his epiglottis), a vocal cord lateralization (actually its the false cord just above the vocal cord) and they may need to place a stent for a couple weeks to help his airway heal & remain open. The stent is a pain because Carson is not able to talk while it is in place and eating is much more difficult. It will require at least an overnight stay (maybe 2) but should not be anywhere near as invasive as his reconstructive surgeries.
So the little hiccup this time (hopefully not but maybe)...we noticed that the area right around Carson's trach stoma (opening around his trach) was more red, puffy, & tender on one side. What?!? He never has a problem with his stoma & this happens 3 days before surgery. I called & sent pictures this morning and they thought we could just wait until we got there & they would address it. Tonight (Tuesday night) it was even more red/puffy. I'll probably touch base with them again in the morning but either way we will want them to look at it just really praying that it doesn't affect the planned surgery. We want to get it done!
One praise...we were NOT going to have the Ronald McDonald House Wednesday night but I got a call today saying there was a cancellation and we could now check in tomorrow (Wednesday). The boys are pumped!! They were running around tonight cheering, "We are going to Cincinnati tomorrow!" "We get to go to the Ronald McDonald House!" Love them and love RMH!!
Thank you again for the many many prayers & thoughts! Hopefully I will be able to update that we did make it and they did go forward with the planned surgery AND that it was a SUCCESS!
Lots of love to all!
This is the plan for the surgery (from a prior post):
They will be doing a supraglottalplasty (basically removing tissue by his epiglottis), a vocal cord lateralization (actually its the false cord just above the vocal cord) and they may need to place a stent for a couple weeks to help his airway heal & remain open. The stent is a pain because Carson is not able to talk while it is in place and eating is much more difficult. It will require at least an overnight stay (maybe 2) but should not be anywhere near as invasive as his reconstructive surgeries.
So the little hiccup this time (hopefully not but maybe)...we noticed that the area right around Carson's trach stoma (opening around his trach) was more red, puffy, & tender on one side. What?!? He never has a problem with his stoma & this happens 3 days before surgery. I called & sent pictures this morning and they thought we could just wait until we got there & they would address it. Tonight (Tuesday night) it was even more red/puffy. I'll probably touch base with them again in the morning but either way we will want them to look at it just really praying that it doesn't affect the planned surgery. We want to get it done!
One praise...we were NOT going to have the Ronald McDonald House Wednesday night but I got a call today saying there was a cancellation and we could now check in tomorrow (Wednesday). The boys are pumped!! They were running around tonight cheering, "We are going to Cincinnati tomorrow!" "We get to go to the Ronald McDonald House!" Love them and love RMH!!
Thank you again for the many many prayers & thoughts! Hopefully I will be able to update that we did make it and they did go forward with the planned surgery AND that it was a SUCCESS!
Lots of love to all!
Tuesday, February 7, 2017
Rescheduled for February 23rd & RSV
Well, we have been the sick household for the past week and a half. Carson had a high fever for 4 days and now we are into occasional fevers, cough, and a nose that won't quit running. It is/was RSV...there were a few nights/days that I was pretty concerned and wondering if we needed to head to the hospital. But thankfully, we were able to battle it from home (with assistance of supplemental oxygen a couple nights). I am SO SO very thankful that Carson didn't catch this nasty virus when he was younger and I am so glad it reared its ugly head prior to surgery because it would have been awful trying to recover from surgery while fighting RSV.
Kellen was fine until this past Thursday when he started in with a cough and fever. Thankfully, his has been more mild. Temperatures are not quite so high so he has been able to carry on in a pretty normal fashion. And as of now, Preston and I have stayed healthy. But ugh, all I see is now how the flu is starting to become more prevalent.
Let me just tell you, if we happen to get the flu...I will be in a corner, crying! This past week and a half has been hard enough...staying at home, worrying about sick kids, taking care of sick kids, etc.
We did get the surgery rescheduled...it is now set for February 23rd. Let's just pray that Carson has recovered from RSV by then and does not become host to any new germs before then!
Kellen was fine until this past Thursday when he started in with a cough and fever. Thankfully, his has been more mild. Temperatures are not quite so high so he has been able to carry on in a pretty normal fashion. And as of now, Preston and I have stayed healthy. But ugh, all I see is now how the flu is starting to become more prevalent.
Let me just tell you, if we happen to get the flu...I will be in a corner, crying! This past week and a half has been hard enough...staying at home, worrying about sick kids, taking care of sick kids, etc.
We did get the surgery rescheduled...it is now set for February 23rd. Let's just pray that Carson has recovered from RSV by then and does not become host to any new germs before then!
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