Trach placement
Posted by Tonni Brende on Friday, April 27, 2018
February 2018
After 3 surgeries trying to get and keep a new, functioning, intrathecal baclofen pump, we had to have everything removed due to infection in the pocket. This means Johnathan now will have to live on oral medications to maintain his severely high tone and prevent pain, dislocations, etc.
See, Johnathan was back in hospital for 3rd month in a row and had completed his 24th surgery. We knew this loss of the baclofen pump would be truly life changing for Johnathan, and that scared me. When he was little, like 4, when we 1st placed a baclofen pump and took him off the medications, we learned that he was so much more than just his loving smile, he was "in there" and in there, he was normal. I never knew how much he truly was comprehending, anticipating, living. It opened the front door for him, literally.
So knowing all that, we knew what devastating affects losing the pump could be; it's just different knowing, than seeing.
On the new medications, Johnathan had become unable to keep his oxygen levels up, and was going to need c-pap/bi-pap constant now. A mask on his face 24/7. No more seeing that big smile;knowing how he hates things on his face. But it was a struggle we knew we had to face and find a way for him to also become comfortable with it. So I informed the family and prepared for discharge.
THEN I GOT HIT BY A MAC TRUCK...
Johnathan needs another surgery; he needs to have a tracheostomy. I lost it. Surgery #25, really, he is only 19. And why a trach, why all these new changes, WHY COULDN'T THE PUMP KEPT WORKING.
After a short meltdown, I was able to ask a few questions and then knew that the surgery needed to happen for Johnathan and his quality of life.
Even though it meant life now hooked to machines and tubes, it did mean that he would not have anything covering his face. And, by bypassing his mouth, tongue, all the mouth issues that had been causing his blocking and inability to get good deep breathes on a regular basis would be gone. That alone made the surgery necessary. Before his 1st surgery here at St Luke's, KC in December, we never knew that the sounds Johnathan had been making for years were his tongue dropping back and blocking his airway, making him unable to breathe until his body kicked in it's own defense of fighting for that deep breathe. YEAH, 21 surgeries had already occurred, at 3 different hospitals over the years, and no one was able to catch this.?!
So now, it is the end of April and we are still learning what to do to keep his trach dry, covered to prevent dangers from going into it from the air while keeping it open to breathe, portable oxygen and Medicaid not covering portable humidifiers or even the mepiplex lite bandages necessary to keep Johnathans site and health on track, never wearing a shirt without getting shot on it, tricks others have learned, making sure distilled water is full and flowing properly to keep his throat moist, constantly needing to suction drool from mouth and snot from trach, changing inner cannula, how often to change them, changing the trach itself, watching the entire teach pop out while trying change collars to keep from skin breakdown due to moisture, and on and on
I know placing this trach seemed like such a devastating thing at first and it is seriously gross with all that comes out, but I also know, this trach should have been placed years ago. And, we all get that smile back.
After 3 surgeries trying to get and keep a new, functioning, intrathecal baclofen pump, we had to have everything removed due to infection in the pocket. This means Johnathan now will have to live on oral medications to maintain his severely high tone and prevent pain, dislocations, etc.
See, Johnathan was back in hospital for 3rd month in a row and had completed his 24th surgery. We knew this loss of the baclofen pump would be truly life changing for Johnathan, and that scared me. When he was little, like 4, when we 1st placed a baclofen pump and took him off the medications, we learned that he was so much more than just his loving smile, he was "in there" and in there, he was normal. I never knew how much he truly was comprehending, anticipating, living. It opened the front door for him, literally.
So knowing all that, we knew what devastating affects losing the pump could be; it's just different knowing, than seeing.
On the new medications, Johnathan had become unable to keep his oxygen levels up, and was going to need c-pap/bi-pap constant now. A mask on his face 24/7. No more seeing that big smile;knowing how he hates things on his face. But it was a struggle we knew we had to face and find a way for him to also become comfortable with it. So I informed the family and prepared for discharge.
THEN I GOT HIT BY A MAC TRUCK...
Johnathan needs another surgery; he needs to have a tracheostomy. I lost it. Surgery #25, really, he is only 19. And why a trach, why all these new changes, WHY COULDN'T THE PUMP KEPT WORKING.
After a short meltdown, I was able to ask a few questions and then knew that the surgery needed to happen for Johnathan and his quality of life.
Even though it meant life now hooked to machines and tubes, it did mean that he would not have anything covering his face. And, by bypassing his mouth, tongue, all the mouth issues that had been causing his blocking and inability to get good deep breathes on a regular basis would be gone. That alone made the surgery necessary. Before his 1st surgery here at St Luke's, KC in December, we never knew that the sounds Johnathan had been making for years were his tongue dropping back and blocking his airway, making him unable to breathe until his body kicked in it's own defense of fighting for that deep breathe. YEAH, 21 surgeries had already occurred, at 3 different hospitals over the years, and no one was able to catch this.?!
So now, it is the end of April and we are still learning what to do to keep his trach dry, covered to prevent dangers from going into it from the air while keeping it open to breathe, portable oxygen and Medicaid not covering portable humidifiers or even the mepiplex lite bandages necessary to keep Johnathans site and health on track, never wearing a shirt without getting shot on it, tricks others have learned, making sure distilled water is full and flowing properly to keep his throat moist, constantly needing to suction drool from mouth and snot from trach, changing inner cannula, how often to change them, changing the trach itself, watching the entire teach pop out while trying change collars to keep from skin breakdown due to moisture, and on and on
I know placing this trach seemed like such a devastating thing at first and it is seriously gross with all that comes out, but I also know, this trach should have been placed years ago. And, we all get that smile back.
Tags: #tracheostomy #trachblues
