Status
Not open for further replies.

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 no worse for wear, but I am totally exhausted.<<<

Been there. Glad to hear about the "total new lease on life"!
 
You shouldn't have to use the plunger to draw up nor push feedings in. Just add water to make it flow easily. Well blenderized foods shouldn't be a problem, especially now with a larger tube. One other thought -- feedings flow in when the person is at least semi-reclining. You have probably discovered all this already on your own, but sometimes the simple things make all the difference!
 
I am sure it is probably too thick, but to give him the calories he needs he already gets a large amount. I think that the chia seeds are thickening it a bit too much. I am working on some organic dietary substitutes that are made from raw vegetable meal that will give him all the nutrients that he needs in a day, plus some organic whey (cold micro filtered) for more protein and calories. It needs to be blended well which won't be a problem with our vitamix, and should be a thinner fluid.
I have never counted calories in all my years, although probably should have, and am finding this all a bit confusing, considering they talk about grams in scoops, and the different conversions between measurements in grams, mls. TBSP. I had his weight stable on the blended food, but use a lot of high fibre things, like flax, chia, hemp hearts, blueberries. I have a lot of talents, but this definitely is not one of them. But I will not give up, I am determined!
Says the mad scientist.

Paulette
 
WHY DOES EVERYTHING HAPPEN ON A FRIDAY AFTER 5PM?

Truer words were never spoken! Every issue we have seems to occur late on Friday's.
 
Go Paulette!
 
WHY DOES EVERYTHING HAPPEN ON A FRIDAY AFTER 5PM?

Truer words were never spoken! Every issue we have seems to occur late on Friday's.

Or, a holiday!
 
Paulette definitely too thick - you need to get the consistency to one that will gravity feed. It might take minutes for it to gravity down a syringe, that's fine.

I used a microphone stand to sit the syringe in - a 60ml syringe fits perfectly in the microphone holder bit - that will be better for your wrists too.
 
paulette - i know you are very busy as tim is sick. no rush to answer this. i just wanted to type this while im having a good day with my tobii! you mentioned a company in the US that makes a totally organic formula, with no additives or chemicals. what company is that? i dont use formulas because of the chemicals. id love to find a natural formula. you might want to look at realfoodblends dot com. theyre in the US, all natural foods, and theyre great to use if youre out for the day - they travel well, no refrigeration necessary..
 
It is called Liquid Hope and it can be ordered through Functional Formularies. I have just been making my own stuff, and putting it through his feeding tube. I am nervous because Tim had his gallbladder attack the same day that I used one of the organic powdered meal replacements I got from the health food store. I think it was a coincidence because he hasn't had any problems since. I just add one scoop to what ever I am eating for supper to make sure that he is getting more vitamins and minerals.
Paulette
 
Hey Paulette
I've been busy wrapped up in my own little world and am finally catching up with reading.
Wayne and the kids say "on your site?" they are so used to me checking in.

What a time you are having of late. Even though it was a rush to get there I'm so glad you managed to get your haircut. Whenever my hair is terrible I always think 'where's Paulette when I need her?'
I'm hoping some tips have helped with the fedding tube. I'm so glad we have each other for guidance.
Take care Paulette.
God bless, Janelle xxx
 
Status
Not open for further replies.
Back
Top
< >