A New Tube For Bob

On Wednesday, we finally got Bob a new G tube. I truly wanted and asked for one of those "low profile" tubes which has detachable tubing and looks like this:

"Low profile" tube.

I thought Bob would be much more comfortable without that tube dangling from his belly. And a detachable tube would be easier to clean.... But we ended up with this "standard" one, instead:

Bob's new tube

Because the doctor told me they didn't have anything like that. So I asked if one could be ordered for the next peg tube replacement and he said, if I wanted anything fancy, I should go out buy it myself! Jeepers. Like you can pick these things up at Wal-Mart... 

I know the insurance will cover a low profile tube and other people on Medicare get them all the time, so why won't this doctor order one for Bob? grrrr....

Then I asked if I could be "trained" to do the next tube replacement at home, because I have read that a lot of people/caregivers do this with the balloon type of tubes. It really is just a matter of deflating the balloon, pulling it out, and sticking a new one in. But he said, no, it was not possible to "train" me.

I tell you, sometimes I think it's all just a crapshoot depending on what doctor you end up with.

The good news, however, is that this new GI doctor says that the tube should be changed out every three months to decrease risk of infection. He also said the balloon that keeps the thing in his belly does not last much more than three months and after that, there is a risk of it "deflating" and falling out. So he's ordering a home health care nurse to come and do the replacement at home every 3 months. Which will certainly be cheaper than paying a doctor to do it. Not to mention, if it's replaced every three months, the darn thing won't get so clogged.  Though, I'm sure I could do the replacement myself if someone would just give me instructions and supplies. And that would save everyone, including the insurance company, money....

But I'm happy it's going to be replaced every three months. And to think, the old GI doctor just told me the tube should last "until it needs replacing" so we always ended up replacing it in an emergency situation. 

This is Bob's 4th tube. The first tube was surgically implanted and after about nine months, it just exploded one day, split right down the side. Kaboom! Scared the crap out of me when that happened. And had to make an emergency run to the doctor's office. The 2nd tube was a balloon device and the darn thing deflated and just fell out after about 5 months. It fell out during the middle of the night and I found it in the morning, with a big mess on my hands, because the feeding pump was still going and the bed sheets were getting fed instead of Bob... when I called the GI doctor's office, I was told to bring him in at 1:00 p.m. but by that time, the hole in Bob's belly had closed and they had to take him to surgery to punch a new hole in....

The last tube, another surgically implanted one, was in there for nine months.... I wanted it replaced before KABOOM, or worse....

What a difference a doctor makes. Replacing it every 3 months makes some darn sense.

Lovenox

The last GI doctor also just yanked out Bob's first surgically implanted tube, without taking him off warfarin. He also did the second surgical procedure while Bob was on warfarin. This new doctor said that doing it that way was "too risky"and Bob could have hemorrhaged.

So, to prepare for this procedure, I had to take Bob off the warfarin starting on the Saturday before, then starting on Monday, I had to inject Bob each morning with Lovenox, a fast-acting heparin blood thinner. On the day of the procedure, I was not to inject the Lovenox until after the procedure was performed. This way, Bob was only off the blood thinner for a "small window" of time.

Now, I've never injected anybody with anything before--so this had me a bit freaked out. The doctor said he could send a home health nurse over to do the injections, but I declined that, because the injection only lasts 24 hours and has to be given at the same time daily and I did not want to sit around worrying if this nurse would show up on time every day or even show up at all. I'd rather have the whole thing under my control, so I know it's getting done right.

Anyway, the GI doctor's nurse told me she would send me directions, but unfortunately when they came it was only directions for when to start the warfarin etc. No directions on how to administer the injection. Then the pharmacy sent the lovenox and the only directions it had were "inject into the skin" and "see patient insert for further directions" however there was no patient insert... So I ended up downloading the patient insert from the internet.... and it didn't look too hard. I told myself, I could do it as long as I didn't freak out and remained calm.

The first morning of the injection, unfortunately, was total chaos. Starting with my morning bath, when I stepped into the tub only to find that I was--- GA! sharing a bath with a lizard! Whom I had to catch/rescue and release outside in the garden. Then, Bob was totally constipated and I had to ultimately get out the latex gloves and baby oil and go up there and "digitally stimulate/remove" a bowel movement, which is truly as gross as it sounds. Then the pharmacy arrived with a delivery which was all screwed up. Then one of the cats threw up all over my desk. And when I finally went to give that first injection, I was so frazzled I couldn't get the darn cap off the needle. It was like the darn thing was super glued on there.

And all this happened before we had to rush to catch the 10:15 a.m. transport for a doctor's appointment! So much for remaining calm...

But I managed. And I got through. And Bob's still alive, so I must've done it right.

This new tube is a love/hate relationship for me. I love it, because it's new and clean and boy, oh boy, does it flow. Not like the old one which ran like a clogged drain. But I hate it, because it's clunky and too short--I'm breaking my back leaning over Bob to do his feedings/medications.  I already called to ask for a tubing extension but they didn't have any for Bob's brand of tube and told me "to go out and buy it" myself.

Jeepers.

I tell you, the medical community just sometimes baffles me....