BlueandGold
Senior member
- Joined
- Feb 28, 2015
- Messages
- 634
- Reason
- PALS
- Diagnosis
- 04/2015
- Country
- US
- State
- WV
- City
- Sandyville
Just venting as I know there are so many that are much worse off than me but I want to share this day.
Woke up at 4:30 am. Could not get back to sleep. Just laid there for 2 hours so I wouldn't wake up my wife. We are now 1 month in to our home remodel so we are living with my parents in their spare bedroom. Sigh. My wife wakes up at 6:30 and gets ready for work. She gets my meds ready and my tube feeding, kisses me on the head and off to work she goes. It's my routine every morning. So I prop myself up in the bed (remember this is not MY bed but my parent's) grab the little stopper on the end of my tube and....it tears off the tube and comes off in my hand. Oh well, not attached anymore but I can still use it to plug the end. Not a big deal.
Now, grab my boost, mixed with warm water (about 12 ounces of sticky liquid) and begin to pour in the tube. Out of nowhere, my hand seizes up and I drop the boost. It completely soaks me, the blanket and all the way down to the mattress. I strip the bed, soak up as much as I can and hit the shower. Ruined the pillow top mattress.
My wife called the surgeons office who inserted my Peg Tube to find out the model number and manufacturer so we could order a new Y Port that would have the new stopper on it. She was told they would not give us the information as they did not want us attempting to replace the part. We would have to schedule a "procedure" at the hospital (not the physician's office) to replace the Y Port. Remember, this is the hospital that nearly killed me when I had the tube placed. Well, needless to say my wife went off in a major way but we got nowhere. If I have to, I'll use duct tape before I ever go back there.
Then, got the emails from Duke about my request for a PWC. I know I'm being a big baby but I wish I could yell. Just for a minute. I had to settle for typing a "certain" word over and over on my iPad. Thanks for letting me rant.
Vince
Woke up at 4:30 am. Could not get back to sleep. Just laid there for 2 hours so I wouldn't wake up my wife. We are now 1 month in to our home remodel so we are living with my parents in their spare bedroom. Sigh. My wife wakes up at 6:30 and gets ready for work. She gets my meds ready and my tube feeding, kisses me on the head and off to work she goes. It's my routine every morning. So I prop myself up in the bed (remember this is not MY bed but my parent's) grab the little stopper on the end of my tube and....it tears off the tube and comes off in my hand. Oh well, not attached anymore but I can still use it to plug the end. Not a big deal.
Now, grab my boost, mixed with warm water (about 12 ounces of sticky liquid) and begin to pour in the tube. Out of nowhere, my hand seizes up and I drop the boost. It completely soaks me, the blanket and all the way down to the mattress. I strip the bed, soak up as much as I can and hit the shower. Ruined the pillow top mattress.
My wife called the surgeons office who inserted my Peg Tube to find out the model number and manufacturer so we could order a new Y Port that would have the new stopper on it. She was told they would not give us the information as they did not want us attempting to replace the part. We would have to schedule a "procedure" at the hospital (not the physician's office) to replace the Y Port. Remember, this is the hospital that nearly killed me when I had the tube placed. Well, needless to say my wife went off in a major way but we got nowhere. If I have to, I'll use duct tape before I ever go back there.
Then, got the emails from Duke about my request for a PWC. I know I'm being a big baby but I wish I could yell. Just for a minute. I had to settle for typing a "certain" word over and over on my iPad. Thanks for letting me rant.
Vince
