zoohouse
Senior member
- Joined
- Jan 14, 2013
- Messages
- 959
- Reason
- CALS
- Diagnosis
- 07/2012
- Country
- CA
- State
- B.C.
- City
- Salmon Arm
So Tim had his feeding tube put in 2 years ago as his breathing was deteriorating quickly in spite of the fact that he was still mobile. He had it changed to a low profile Mic Key which was great and just needed to be flushed with water to keep it open. On the odd time that I forgot to give him his medication before putting his bipap on I would crush them and add water and put it in through his feeding tube.
Tim is a full quad now but has beed able to speak clearly and drink smoothies for nourishment up until a month ago. His voice quality has changed and he has lost control of his head. If he couldn't get his head down and to the right he would have difficulty swallowing and would sometimes choke, so 2 weeks ago he asked me to start giving his smoothies through his feeding tube. No problem, except it turned out not to be as simple as I thought. The Kangaroo pump that the VA purchased from him is not used in the hospitals around here and getting the tubing wasn't easy. So I started using a catheter tipped 60cc syringe but it would not go in by gravity alone. I had to use the plunger to push it in, no big deal, until I washed it and tried to use it again. The silicone on the rubber plunger was washed off and the plunger would stick. I have developed tendonitis in my hands and arms from all the gripping and moving I do caring for Tim, and now I was straining even harder to draw up his smoothie and push it in with a sticky plunger. After reading here, I saw that an O-ring syringe does not stick after cleaning, so I went on line to purchase some. Found them in the US but couldn't find a supplier in Canada. I even called the local vet as they are used to feed sick animals, but they use the regular rubber plunger type. Finally found a place that would ship them to Canada for a decent shipping cost and ordered them.
Last friday I had given him one syringe full when the feeding tube completely blocked. I tried every trick in the book but could not clear it. I called one of my nursing friends that deals with tube feeds where she works and she tried but couldn't. WHY DOES EVERYTHING HAPPEN ON A FRIDAY AFTER 5PM? I had a foley catheter incase Tim needed to be catheterized so I removed his plugged feeding tube and immediately inserted the Foley (urinary catheter) checked positioning and taped it up. Yesterday called his doctor who made arrangements to have it replaced with a new Mic Key today. So off to Kamloops 1 ½ hours away, late by 15 min. so had to wait for them to fit us in. I asked how often these tubes should be changed and was told that when they start them they make appointments to change them every 6 months. I told them that Tim's was in for 17 months and that nobody had told us that. Whoops, the doctor said and took full responsibility. So Tim is all set up with new larger bore Mic Key and appointment for change in 6 months.
I found a company in the US that makes a totally organic formula, with no additives or chemicals, but of course no one in Canada. I refuse to use a formula as there are just too many chemicals for my liking. If I have to I will continue pushing in his smoothies with a syringe. I am getting a quote on what it would cost to have the formula shipped to Canada but I have a feeling it is going to be very expensive.
So Tim is no worse for wear, but I am totally exhausted. I had a 4pm hair cut appointment that took me 3 weeks to get, and I just made it there after driving back from Kamloops. Now I think I will take a nap while Tim plays on his computer.
ps. This may sound really stupid but after 2 years we only just now figured out that his Dragon Naturally speaking allowed him to access the net. When they set him up at the VA in Seattle I wasn't with him, and I don't know if they didn't tell him (they didn't have Wifi at the VA hospital) or Tim didn't hear that it would control his entire computer. He has a total new lease on life, just in time for the rainy season.
Paulette
Tim is a full quad now but has beed able to speak clearly and drink smoothies for nourishment up until a month ago. His voice quality has changed and he has lost control of his head. If he couldn't get his head down and to the right he would have difficulty swallowing and would sometimes choke, so 2 weeks ago he asked me to start giving his smoothies through his feeding tube. No problem, except it turned out not to be as simple as I thought. The Kangaroo pump that the VA purchased from him is not used in the hospitals around here and getting the tubing wasn't easy. So I started using a catheter tipped 60cc syringe but it would not go in by gravity alone. I had to use the plunger to push it in, no big deal, until I washed it and tried to use it again. The silicone on the rubber plunger was washed off and the plunger would stick. I have developed tendonitis in my hands and arms from all the gripping and moving I do caring for Tim, and now I was straining even harder to draw up his smoothie and push it in with a sticky plunger. After reading here, I saw that an O-ring syringe does not stick after cleaning, so I went on line to purchase some. Found them in the US but couldn't find a supplier in Canada. I even called the local vet as they are used to feed sick animals, but they use the regular rubber plunger type. Finally found a place that would ship them to Canada for a decent shipping cost and ordered them.
Last friday I had given him one syringe full when the feeding tube completely blocked. I tried every trick in the book but could not clear it. I called one of my nursing friends that deals with tube feeds where she works and she tried but couldn't. WHY DOES EVERYTHING HAPPEN ON A FRIDAY AFTER 5PM? I had a foley catheter incase Tim needed to be catheterized so I removed his plugged feeding tube and immediately inserted the Foley (urinary catheter) checked positioning and taped it up. Yesterday called his doctor who made arrangements to have it replaced with a new Mic Key today. So off to Kamloops 1 ½ hours away, late by 15 min. so had to wait for them to fit us in. I asked how often these tubes should be changed and was told that when they start them they make appointments to change them every 6 months. I told them that Tim's was in for 17 months and that nobody had told us that. Whoops, the doctor said and took full responsibility. So Tim is all set up with new larger bore Mic Key and appointment for change in 6 months.
I found a company in the US that makes a totally organic formula, with no additives or chemicals, but of course no one in Canada. I refuse to use a formula as there are just too many chemicals for my liking. If I have to I will continue pushing in his smoothies with a syringe. I am getting a quote on what it would cost to have the formula shipped to Canada but I have a feeling it is going to be very expensive.
So Tim is no worse for wear, but I am totally exhausted. I had a 4pm hair cut appointment that took me 3 weeks to get, and I just made it there after driving back from Kamloops. Now I think I will take a nap while Tim plays on his computer.
ps. This may sound really stupid but after 2 years we only just now figured out that his Dragon Naturally speaking allowed him to access the net. When they set him up at the VA in Seattle I wasn't with him, and I don't know if they didn't tell him (they didn't have Wifi at the VA hospital) or Tim didn't hear that it would control his entire computer. He has a total new lease on life, just in time for the rainy season.
Paulette
