"March, In Like A Lion, Out Like A Lamb..."
Isn't that how the old proverb went?
Well I'm here to tell you that from a personal standpoint, that damn lion roared most of March right into early April! I would suggest that even our weather bucked the trend and sided with the lion.
As I mentioned in previous entries, we have tried, as best we can with this disease, to make our decisions ahead of what needs to be done. It allows me some control over my situation, and probably more important, lessens my heightened anxiety, a good thing for everyone!
So no different with the feeding tube insertion. We were looking to have my feeding tube put in while I was both somewhat healthy and before I was a 100% reliant on it as my nutrition source.
We were given an initial date of March 21st. Checked my busy calendar and didn't like that date as it was Ben's final game for hockey, day of champions, and my sister Pam's birthday. You know being on a operating table on a family members birthday is really stealing the spotlight and heaven forbid if something went awry!lol
Anyways, after going back and forth, it had to be the 21st. The doctor assured me that I'd be up and moving in no time(though as his assistant said "he's never had the procedure", foreshadow that comment).
The procedure is 20-30 minutes, scope through the mouth into the stomach, incision in stomach, insert the tube and voila! All seemed to go well.
We headed home after the standard recovery time and though uncomfortable we were to meet a nurse at home for follow up care.
Then the fun began...no nurse showed, which would of been fine, however, I started to get a fever, chills, nausea and couldn't eat or drink anything.
After several attempts to connect with the nurse, we finally did. He wasn't going to make it so the reco was head for the ER. 911 it was, because Susan wasn't interested in moving me!
Fast forward...ended up in the hospital for 3 nights, no infection, maybe a loose "seal" with the tube. So they filled me with antibiotics and fluids and released me on Monday. It was a terrible couple of weeks as the hospital stay provided me with a number of setbacks worsening my overall condition; couldn't stand with my walker, needed 2 people to transfer me everywhere, help needed for all eating and oh yeah, dealing with this tube sticking out of my belly!
Lots of people in and out over the rest of March and into April ; nurses, OT, PT, Case and Support workers, all very supportive and helpful to help try and get me back on track.
Me, I was miserable, and probably in my "dark" place some. The thing about this disease is you hit plateaus and then you have some level of "normalcy" and get into a routine only to get kicked again and have to figure out what's next. We were all feeling it. Susan, god bless her, somehow, for the most part, held us together and we have weathered this storm. I'm feeling better and new "routines" seem to be replacing the old.
April then offered up a chest cold and another trip back to the ER. My inability to "hawk a loogie" spooked a pneumonia concern but fortunately my lungs were clear. All I needed was "nose sling" for the next few days to catch all my "boogers"(as Sarah says).
Alas, the journey continues...
So no different with the feeding tube insertion. We were looking to have my feeding tube put in while I was both somewhat healthy and before I was a 100% reliant on it as my nutrition source.
We were given an initial date of March 21st. Checked my busy calendar and didn't like that date as it was Ben's final game for hockey, day of champions, and my sister Pam's birthday. You know being on a operating table on a family members birthday is really stealing the spotlight and heaven forbid if something went awry!lol
Anyways, after going back and forth, it had to be the 21st. The doctor assured me that I'd be up and moving in no time(though as his assistant said "he's never had the procedure", foreshadow that comment).
The procedure is 20-30 minutes, scope through the mouth into the stomach, incision in stomach, insert the tube and voila! All seemed to go well.
We headed home after the standard recovery time and though uncomfortable we were to meet a nurse at home for follow up care.
Then the fun began...no nurse showed, which would of been fine, however, I started to get a fever, chills, nausea and couldn't eat or drink anything.
After several attempts to connect with the nurse, we finally did. He wasn't going to make it so the reco was head for the ER. 911 it was, because Susan wasn't interested in moving me!
Fast forward...ended up in the hospital for 3 nights, no infection, maybe a loose "seal" with the tube. So they filled me with antibiotics and fluids and released me on Monday. It was a terrible couple of weeks as the hospital stay provided me with a number of setbacks worsening my overall condition; couldn't stand with my walker, needed 2 people to transfer me everywhere, help needed for all eating and oh yeah, dealing with this tube sticking out of my belly!
Lots of people in and out over the rest of March and into April ; nurses, OT, PT, Case and Support workers, all very supportive and helpful to help try and get me back on track.
Me, I was miserable, and probably in my "dark" place some. The thing about this disease is you hit plateaus and then you have some level of "normalcy" and get into a routine only to get kicked again and have to figure out what's next. We were all feeling it. Susan, god bless her, somehow, for the most part, held us together and we have weathered this storm. I'm feeling better and new "routines" seem to be replacing the old.
April then offered up a chest cold and another trip back to the ER. My inability to "hawk a loogie" spooked a pneumonia concern but fortunately my lungs were clear. All I needed was "nose sling" for the next few days to catch all my "boogers"(as Sarah says).
Alas, the journey continues...
Oh yes I almost forgot! Susan and I
did miss Ben’s last playoff hockey game which was bittersweet. He scored 2 goals and 2 assists and
was named league MVP and got the huge trophy...I hadn’t missed a game all year...but when he got to tell me at the hospital I couldn't of been more proud!
ALS Walk June 7th, Georgetown
Come join us or sponsor me!
