Journal entry by Ashley Hansen —
"A HUGE VICTORY!" ~ Day 596
As I sit here reminiscent of the last 18 months, there are moments that still bring me to my knees, moments that simply leave me in awe, the moments I wish I could go back and change and the moments I simply wish I never had to remember. However, December 28th, 2023 will forever be a "moment" of pure joy, finally something to celebrate!!!
Following a hectic Christmas and 1 heck of a snow storm, we all made it to Omaha to spend the week enjoying Christmas break with Carson but more so to take part in his Decannulation!!!
I remember getting into his room December 27th, arms full of Christmas presents & kids busting at the seams with energy. His room so warm and cozy, full of love...its the best! He was gifted presents by a local family that once also were at The Ambassador. As well as some of his nursing staff giving him some thoughtful gifts....I'm telling you he has some of the best colognes any teenage boy could have! He also received some generous gifts towards his room and road to recovery from family & friends, this is so generous and we thank you! We were happy to see him feeling better following his diagnosis of Covid and then Pneumonia, he was finally on the mend and looking better!! I couldn't help but look at him with his Trach and think "Wow Kid, we finally have made it....its finally coming out!" A day we truly weren't sure could happen, you see when we met with his ENT a year ago he wasn't convinced Carson could maintain his airway and manage secretions without a Tracheostomy, but he was willing to work with us!
Now, initially the Tracheostomy was determined necessary as he simply was having lots of neuo-breathing while on the Ventilator while at Colorado (almost like hyperventilating) After 34 days of being intubated it was a "Try & See" Approach. He was exubated successfully & he was awake but not at all "there". He would take short breaths and struggle to keep his heartrate down, it was painful to watch. Also, lacking his Bilateral Skull Bones, he had nowhere to secure a BiPap Mask, we tried multiple options. But the suction was never a success. With the many....and I mean many upcoming surgeries we decided the Trach was in his best interest. Now, at the time we thought he would have it maybe 4 to 6 months.....not 17 months! He remained on the Ventilator at night but was room air from there on out, it wasn't until arriving to The Ambassador in November 2022 (Trach placed in June) that he was weaned from that quickly, such a blessing! So we knew it could be an uphill battle with getting the Trach out. He definitely went thru his ups and downs with this Trach! He 1st had a Cuffed Schiley, cuffed meant he had an inflated little balloon attached to it, it allowed for more "controll" persay. However, many his secretions amped up with this sucker!!! He was like a volcano of secretions every morning and throughout the day!!! We eventually graduated to an uncuffed version but it wasn't until that November we got him a new brand, a Bivonna which was much more palpable and that was his 1st game changer!!! This change improved his secretions to the point we started using the PMV (voice valve that allowed air to come in but not to be exhaled out, a training valve of sorts) we started at, can he tolerate 10 minutes, then 30 then hours until we reached 12 hours a day. Once he met that milestone around Summer this year, we started capping (fully capped trach) again, slow and steady until we reached capping all waking hours. It took him around 5 months to reach that, but man even seeing a Cap WORK was miraculous!!!! Once the sleep study happened and was a success, the ball rolled quickly and here we were....Decannulation day!
We checked into Children's Hospital at 1pm, as we were walking to his room for the stay Tony and I instantly noticed the room number..... Room 413! We couldn't believe it! Now if you've been on this journey since the beginning this 413 will make sense, if not....well Philippians 4:13 was Carson's verse, the one he loved since 7th grade, the verse he had on his bedroom wall and as his screen saver on his phone....its a verse that has rang true over and over again on his journey, & a verse that has held us through very hard times ~ "I can do all thing's through Christ who strengthens me", so to see that out of alllllll of these Hospital rooms, Carson gets Room 413 on his Decannulation Day, Hallelujah!!!
We completed all the check in and admission details, got him comfortable and just waited!!! Now with 2 kids in a small hospital room this may seem daunting, but thank goodness for amazing nurses and new Christmas gifts to keep them entertained 😀 As I sat there waiting, I remember those nights of worry over this trach, the endless amount of training we took, how we could probably change a trach with our eye's closed at this point, how we wouldn't have to have a Trach Bag with every outing, how his neck will feel so free after this and how this in the end truly meant he is coming home soon!!!! Wow, let's talk about the emotions that were bubbling up, so so many!
A resident walked in around 4pm and says "Welp, who wants to pull this sucker?!" He gave one of US the option to Decannulate, how cool!!!! Now I wanted to absorb the moment and capture it all, so Tony took the pleasure of Decannulating. Now as exciting as this all sounds, it was oddly anticlimactic...yet so beautiful. He simply removes the ties and on 1, 2, 3...he pulls it out leaving this tiny hole. Carson was so calm, he didn't flinch or cough, there was such a peace in that room, truly! The resident covered the stoma with a bandage and it was done!!! Carson did really great, he did still have lots of coughing throughout the day, but recovering from Covid & Pneumonia put his secretions level higher, so we were just managing that and changing the gauze often to keep the sight clean and dry. He was released the next morning and doing great. Now he definitely was hyper aware of it being gone, he would often try to touch the gauze or point....which thinking back now I believe he was upset over the tape and gauze being there....mainly the dreaded tape, he was not a fan! We eventually switched to a mepalex gauze which has been a slight battle to keep sealed, but seemed to be better than the other "tape option". He got to enjoy 4 more days of family time, going outside for some fresh air, lots of stretching and cuddles in bed! It was such a huge prayer answered to follow through with a big time goal we had, these are the moments that fuel us and catapult us forward!!!!
Now, looking forward we had his Care Conference Meeting January 3rd in which we set in place some crucial things to more forward.
1) Still pushing for Inpatient Rehabilitation at a Disorder of Consciousness Program -Working with getting an out of state insurance contract with Illinois for The Shirley Ryan Ability Lab in Chicago! This means if it's approved he will be going asap!!! Our facility attempted to get Madonna in Omaha to take him, however they only approved an Outpatient 4x a week option....which really isn't an option for us!
2) We set a preliminary discharge date to get the ball in motion and Insurance on board. The date set is March 4th, since this is within that 60 day discharge criteria for DHHS, this hopefully means we have access to waivers to assist us in a vehicle modification or purchase, which has overall been the hardest thing to access!
3) With a discharge date in place, this allows us to set up his Team back home. We have established his PCP in Kearney & thankfully his Pulmonologist frequents Kearney monthly, his Neurosurgeon is on an Yearly Follow-up so keeping him in Omaha as well as his Neurologist. I'm working on establishing an Outpatient OT, PT, and Speech Team once we know more of what he is granted for hours post discharge. Also, hoping to get him into an Acupuncture and Chiropractic regiment locally and then continued Holistic Cares through Four Winds in Omaha. Hoping to transfer his Orthopedic Doctor to Kearney as well in hopes to get his Botox established! It's such an extensive array of Team members that makes the ship sail smoothly!
4) Establishing his DME (Durable Medical Equipment) and Pharmacy Needs. This one I'm nervous about, mainly due to what other parents have relayed to me about the miseries of DME and Pharmaceutical needs being a complete nightmare 😳 Carson has an extensive regiment of medications, specialty foods, and equipment needs such as a suction machine, bed, stander, shower chair, ect. I'm hitting many obstacles with what he needs versus what they will give you....its a disaster and he has 2 Insurance Plans...like what the heck?! For example, I found out they won't approve a pulse oximeter machine....something that literally communicates so much for us!!! A high heartrate means he's uncomfortable, in pain, or in distress. Also, with recently being Decannulated, monitoring his O2 stats is crucial, things like this seems like a no brainer, yet they make it difficult....why?!?! So I continue to call, appeal, and negotiate.
5) Finishing his Room!!! The 1st stage of construction happened while we were away, so that was a blessing!! A wall to an unnecessary closet was taken out & new ADA Patio Doors installed. I also went and ordered his flooring and tile to complete his shower area and floors, its so neat to see it coming together! There's still so much I need to accomplish! His funding was unfortunately displaced to other areas that I was unaware of, so I wasn't able to purchase things like his cabinets for his medical storage/nurses station, a dresser, sheets, towels, storage, curtains, fixtures, lighting, ect. Its been so overwhelming for us....just keep praying it all falls into place somehow and we fill in the missing pieces!
6) Finding a darn VAN! We have had many leads, but some are just too small to fit us all, or a side entry, or just too old or too many miles in which waiver won't help you then....so many barriers to say the least but praying and searching daily for the right fit! Once we have this purchased, we can take him anywhere!!!! It will be such a humbling and freeing moment!!!!!
So here we are, 6 steps....some days I think only 6, I got this.....and others I say Oh My Gosh....how daunting those 6 steps seem!!! Its such a Rollercoaster of emotions....something so serious as bringing home your medically fragile child....you just want it right!!! I've been struggling to find the right balance of Carson, Life, and a Job that fits into it all...unfortunately life doesn't stop....times are tight and hard with only 1 Full-time working parent....we are trying our best to manage this life, but nobody prepares you for the amount of stress this all is....nobody. We have 2 years until the State of Nebraska views us as Parents eligible to be paid as Caregivers, since we do everything (and more!) than any paid nurse does....it makes no sense to me to not compensate a Caregiver....parent or not!!! So I will continue to search for that balance, for another job that just fits right , and pray I can use our journey to help others at the same time!
We will be hosting a campaign for Carson called "Be Part of the Miracle, Carson's Road to recovery". I will be mailing out various businesses a "Be Part of the Miracle Sponsorship" in hopes they will chose to donate and sponsor Carson in his recovery!!!! So if you are apart of a business or work for a Business that would be interested in this please comment below or email us at keepfightingcarson@gmail.com with your business contacts and information!!!! We also have a Go Fund Me for this Campaign. Its located under "Ways to Give Tab" on our page above, scroll to the bottom and the link to the NEW Go Fund Me is listed!!!! This is a small way to help when you simply don't know what else to do ♥️
Also, if your school or organization is interested in any of these fundraising options, please reach out to me!!! We are all looking for efforts to support Carson's Road to Recovery and Journey HOME 🏡 ♥️
Prayers for Carson ~
●Lord, please continue to heal Carson's Trachea and Stoma, please ensure he has no problems moving forward.
●Lord, please bless Carson with a 2nd chance at Rehabilitation. We pray Shirley Ryan Ability Lab is in his Journey, but if not, please open a. Ew door of possibilities for him.
●Lord, we pray that Carson has a wonderfully adapted and accessible home to come home to and all the things he needs to make his new journey successful.
●Lord, we pray that we find the perfect Van for our Family to all be together again!!!
●Lord, we pray our story touches countless other people, the ones that need to hear your love. We pray his story continues to be supported by generosity and sponsorships to propel it even further like a rock to water watching the ripple move.
AMEN
#KEEPFIGHTINGCARSON
XO ASHLEY
As I sit here reminiscent of the last 18 months, there are moments that still bring me to my knees, moments that simply leave me in awe, the moments I wish I could go back and change and the moments I simply wish I never had to remember. However, December 28th, 2023 will forever be a "moment" of pure joy, finally something to celebrate!!!
Following a hectic Christmas and 1 heck of a snow storm, we all made it to Omaha to spend the week enjoying Christmas break with Carson but more so to take part in his Decannulation!!!
I remember getting into his room December 27th, arms full of Christmas presents & kids busting at the seams with energy. His room so warm and cozy, full of love...its the best! He was gifted presents by a local family that once also were at The Ambassador. As well as some of his nursing staff giving him some thoughtful gifts....I'm telling you he has some of the best colognes any teenage boy could have! He also received some generous gifts towards his room and road to recovery from family & friends, this is so generous and we thank you! We were happy to see him feeling better following his diagnosis of Covid and then Pneumonia, he was finally on the mend and looking better!! I couldn't help but look at him with his Trach and think "Wow Kid, we finally have made it....its finally coming out!" A day we truly weren't sure could happen, you see when we met with his ENT a year ago he wasn't convinced Carson could maintain his airway and manage secretions without a Tracheostomy, but he was willing to work with us!
Now, initially the Tracheostomy was determined necessary as he simply was having lots of neuo-breathing while on the Ventilator while at Colorado (almost like hyperventilating) After 34 days of being intubated it was a "Try & See" Approach. He was exubated successfully & he was awake but not at all "there". He would take short breaths and struggle to keep his heartrate down, it was painful to watch. Also, lacking his Bilateral Skull Bones, he had nowhere to secure a BiPap Mask, we tried multiple options. But the suction was never a success. With the many....and I mean many upcoming surgeries we decided the Trach was in his best interest. Now, at the time we thought he would have it maybe 4 to 6 months.....not 17 months! He remained on the Ventilator at night but was room air from there on out, it wasn't until arriving to The Ambassador in November 2022 (Trach placed in June) that he was weaned from that quickly, such a blessing! So we knew it could be an uphill battle with getting the Trach out. He definitely went thru his ups and downs with this Trach! He 1st had a Cuffed Schiley, cuffed meant he had an inflated little balloon attached to it, it allowed for more "controll" persay. However, many his secretions amped up with this sucker!!! He was like a volcano of secretions every morning and throughout the day!!! We eventually graduated to an uncuffed version but it wasn't until that November we got him a new brand, a Bivonna which was much more palpable and that was his 1st game changer!!! This change improved his secretions to the point we started using the PMV (voice valve that allowed air to come in but not to be exhaled out, a training valve of sorts) we started at, can he tolerate 10 minutes, then 30 then hours until we reached 12 hours a day. Once he met that milestone around Summer this year, we started capping (fully capped trach) again, slow and steady until we reached capping all waking hours. It took him around 5 months to reach that, but man even seeing a Cap WORK was miraculous!!!! Once the sleep study happened and was a success, the ball rolled quickly and here we were....Decannulation day!
We checked into Children's Hospital at 1pm, as we were walking to his room for the stay Tony and I instantly noticed the room number..... Room 413! We couldn't believe it! Now if you've been on this journey since the beginning this 413 will make sense, if not....well Philippians 4:13 was Carson's verse, the one he loved since 7th grade, the verse he had on his bedroom wall and as his screen saver on his phone....its a verse that has rang true over and over again on his journey, & a verse that has held us through very hard times ~ "I can do all thing's through Christ who strengthens me", so to see that out of alllllll of these Hospital rooms, Carson gets Room 413 on his Decannulation Day, Hallelujah!!!
We completed all the check in and admission details, got him comfortable and just waited!!! Now with 2 kids in a small hospital room this may seem daunting, but thank goodness for amazing nurses and new Christmas gifts to keep them entertained 😀 As I sat there waiting, I remember those nights of worry over this trach, the endless amount of training we took, how we could probably change a trach with our eye's closed at this point, how we wouldn't have to have a Trach Bag with every outing, how his neck will feel so free after this and how this in the end truly meant he is coming home soon!!!! Wow, let's talk about the emotions that were bubbling up, so so many!
A resident walked in around 4pm and says "Welp, who wants to pull this sucker?!" He gave one of US the option to Decannulate, how cool!!!! Now I wanted to absorb the moment and capture it all, so Tony took the pleasure of Decannulating. Now as exciting as this all sounds, it was oddly anticlimactic...yet so beautiful. He simply removes the ties and on 1, 2, 3...he pulls it out leaving this tiny hole. Carson was so calm, he didn't flinch or cough, there was such a peace in that room, truly! The resident covered the stoma with a bandage and it was done!!! Carson did really great, he did still have lots of coughing throughout the day, but recovering from Covid & Pneumonia put his secretions level higher, so we were just managing that and changing the gauze often to keep the sight clean and dry. He was released the next morning and doing great. Now he definitely was hyper aware of it being gone, he would often try to touch the gauze or point....which thinking back now I believe he was upset over the tape and gauze being there....mainly the dreaded tape, he was not a fan! We eventually switched to a mepalex gauze which has been a slight battle to keep sealed, but seemed to be better than the other "tape option". He got to enjoy 4 more days of family time, going outside for some fresh air, lots of stretching and cuddles in bed! It was such a huge prayer answered to follow through with a big time goal we had, these are the moments that fuel us and catapult us forward!!!!
Now, looking forward we had his Care Conference Meeting January 3rd in which we set in place some crucial things to more forward.
1) Still pushing for Inpatient Rehabilitation at a Disorder of Consciousness Program -Working with getting an out of state insurance contract with Illinois for The Shirley Ryan Ability Lab in Chicago! This means if it's approved he will be going asap!!! Our facility attempted to get Madonna in Omaha to take him, however they only approved an Outpatient 4x a week option....which really isn't an option for us!
2) We set a preliminary discharge date to get the ball in motion and Insurance on board. The date set is March 4th, since this is within that 60 day discharge criteria for DHHS, this hopefully means we have access to waivers to assist us in a vehicle modification or purchase, which has overall been the hardest thing to access!
3) With a discharge date in place, this allows us to set up his Team back home. We have established his PCP in Kearney & thankfully his Pulmonologist frequents Kearney monthly, his Neurosurgeon is on an Yearly Follow-up so keeping him in Omaha as well as his Neurologist. I'm working on establishing an Outpatient OT, PT, and Speech Team once we know more of what he is granted for hours post discharge. Also, hoping to get him into an Acupuncture and Chiropractic regiment locally and then continued Holistic Cares through Four Winds in Omaha. Hoping to transfer his Orthopedic Doctor to Kearney as well in hopes to get his Botox established! It's such an extensive array of Team members that makes the ship sail smoothly!
4) Establishing his DME (Durable Medical Equipment) and Pharmacy Needs. This one I'm nervous about, mainly due to what other parents have relayed to me about the miseries of DME and Pharmaceutical needs being a complete nightmare 😳 Carson has an extensive regiment of medications, specialty foods, and equipment needs such as a suction machine, bed, stander, shower chair, ect. I'm hitting many obstacles with what he needs versus what they will give you....its a disaster and he has 2 Insurance Plans...like what the heck?! For example, I found out they won't approve a pulse oximeter machine....something that literally communicates so much for us!!! A high heartrate means he's uncomfortable, in pain, or in distress. Also, with recently being Decannulated, monitoring his O2 stats is crucial, things like this seems like a no brainer, yet they make it difficult....why?!?! So I continue to call, appeal, and negotiate.
5) Finishing his Room!!! The 1st stage of construction happened while we were away, so that was a blessing!! A wall to an unnecessary closet was taken out & new ADA Patio Doors installed. I also went and ordered his flooring and tile to complete his shower area and floors, its so neat to see it coming together! There's still so much I need to accomplish! His funding was unfortunately displaced to other areas that I was unaware of, so I wasn't able to purchase things like his cabinets for his medical storage/nurses station, a dresser, sheets, towels, storage, curtains, fixtures, lighting, ect. Its been so overwhelming for us....just keep praying it all falls into place somehow and we fill in the missing pieces!
6) Finding a darn VAN! We have had many leads, but some are just too small to fit us all, or a side entry, or just too old or too many miles in which waiver won't help you then....so many barriers to say the least but praying and searching daily for the right fit! Once we have this purchased, we can take him anywhere!!!! It will be such a humbling and freeing moment!!!!!
So here we are, 6 steps....some days I think only 6, I got this.....and others I say Oh My Gosh....how daunting those 6 steps seem!!! Its such a Rollercoaster of emotions....something so serious as bringing home your medically fragile child....you just want it right!!! I've been struggling to find the right balance of Carson, Life, and a Job that fits into it all...unfortunately life doesn't stop....times are tight and hard with only 1 Full-time working parent....we are trying our best to manage this life, but nobody prepares you for the amount of stress this all is....nobody. We have 2 years until the State of Nebraska views us as Parents eligible to be paid as Caregivers, since we do everything (and more!) than any paid nurse does....it makes no sense to me to not compensate a Caregiver....parent or not!!! So I will continue to search for that balance, for another job that just fits right , and pray I can use our journey to help others at the same time!
We will be hosting a campaign for Carson called "Be Part of the Miracle, Carson's Road to recovery". I will be mailing out various businesses a "Be Part of the Miracle Sponsorship" in hopes they will chose to donate and sponsor Carson in his recovery!!!! So if you are apart of a business or work for a Business that would be interested in this please comment below or email us at keepfightingcarson@gmail.com with your business contacts and information!!!! We also have a Go Fund Me for this Campaign. Its located under "Ways to Give Tab" on our page above, scroll to the bottom and the link to the NEW Go Fund Me is listed!!!! This is a small way to help when you simply don't know what else to do ♥️
Also, if your school or organization is interested in any of these fundraising options, please reach out to me!!! We are all looking for efforts to support Carson's Road to Recovery and Journey HOME 🏡 ♥️
Prayers for Carson ~
●Lord, please continue to heal Carson's Trachea and Stoma, please ensure he has no problems moving forward.
●Lord, please bless Carson with a 2nd chance at Rehabilitation. We pray Shirley Ryan Ability Lab is in his Journey, but if not, please open a. Ew door of possibilities for him.
●Lord, we pray that Carson has a wonderfully adapted and accessible home to come home to and all the things he needs to make his new journey successful.
●Lord, we pray that we find the perfect Van for our Family to all be together again!!!
●Lord, we pray our story touches countless other people, the ones that need to hear your love. We pray his story continues to be supported by generosity and sponsorships to propel it even further like a rock to water watching the ripple move.
AMEN
#KEEPFIGHTINGCARSON
XO ASHLEY
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