Trouble With That Peg Tube

This will be a long post as Tuesday was a very long day and it all started when Bob's peg tube dislodged and came right out of his stomach.

Of course, this would happen while the night feeding pump was turned on. And of course, Bob didn't even notice it happening, so I found it in the morning when I went to disconnect the pump and Bob told me that his bed was "wet". 

First, I thought he had wet the bed. But when I went to change the bed pad, I found it wasn't wet so much as crunchy and oh lord, that's means a Jevity spill. So immediately I checked the pump connections which were fine, and that's when I noticed the darn peg tube was no longer in Bob's stomach but lying on the bed. GA!

This was a first for me. This was a bit of a shock. In fact, it was downright horrifying.

And I didn't know what to do. And there was no one to call at 6:30 a.m.

So, I checked Bob's belly hole, but it seemed fine, no blood or anything. Bob said he felt fine. I wondered, briefly, should I try to re-insert the tube? But when I looked at the tube, the end that goes into the stomach seemed rather brown and gross and god knows, I might make the whole situation worse, so I gave up that idea. Instead, I set to work cleaning up the mess of Jevity which had poured from the end of the tube all over the bed. Then cleaning up Bob who was also covered with Jevity.

Then I got him dressed as I figured we were going to have to go somewhere to get this tube replaced.

At 9:00 I called the gastro doctor's office but no one was available to talk to except the receptionist who took a message for the nurse.

Meanwhile, I told Bob that we would have to go to the doctor's office and we would have to take the car--which we haven't done in a while. Bob was not pleased with this idea and I must admit, it is difficult getting him into The Green Machine which has old fashion bench seats, but I've done it. It can be done in a pinch. Bob kept telling me, "No. Ride!" And I kept telling him that he couldn't "ride" with the wheelchair transport because they require a 24 hour reservation.... Back and forth we went like this, Bob saying "Ride!", me saying "No, not possible." Then Bob says, "Bus!"

I have taken Bob on the bus before, which is not bad if the trip is not a long one. So, I look up the bus schedules, though this seems a nightmarish solution when one is going to replace a peg tube, and I find that to get to the gastro doctors office we'd have to transfer three different routes and that will take ages...

So we were back to "Ride!" and "No, not possible." And Bob getting pretty upset.

Finally the nurse calls and tells me that Bob's regular doctor is not available, but another doctor is and he wants Bob at the hospital at 1:00 p.m. to replace his peg tube. I'm thinking, oh crap, because I thought it could be done in the doctor's office like the last time Bob's tube was replaced, but she says no, because the old tube has dislodged and he needs to go to the hospital. Now, she's talking about the hospital where Bob had the stroke and I am not too keen on this idea, but what can I do?  She tells me it's only for "a day surgery procedure" and it should take about 2-3 hours. Then he can come home.

I relate all this to Bob who says, "Ride!" 

I then call the wheelchair transport and ask them if they make any exceptions for emergencies and I am told if it's an emergency, I should call an ambulance. I explain our situation, about the peg tube, etc., and the woman is very nice but you know rules are rules and they need a 24 hour notice or  I must "private pay" for the ride. "Private pay" is going to cost $76.00 round trip. Seventy-six dollars! This for a round trip that would normally cost eight bucks.

I tell her I have to think about that one.

She tells me she could discount it to $60.00.

All righty. 

After that, I dig up an old business card that was given to me last year by one of the wheelchair transport drivers who is an independent contractor and takes jobs on the side. I call him and explain the situation, and he tells me he can get us to the hospital but he can't get us back home because he has another commitment. He'd charge me $20.00 one way. But how do we get home? Then he mentions he has a friend in the same business and gives me his number, who I call and get set up for $40.00 round trip.

Finally, at 12:15 we are picked up and I pay the driver $20.00 cash. I tell you, it feels like highway robbery. But we get to hospital on time and Bob is happy because he can "ride"...

At the hospital, Bob is admitted to day surgery. The doctor comes in. This doctor is bald and has a bandaid pasted right on the top of his head and I can't stop looking at it.  He says they are going to do the procedure right there in the day surgery waiting area.  He brings out a new peg tube and I see right away the thing doesn't have a clamp on it. I ask him if he can put a clamp on it before he puts it in. Because the tube he has is one solid piece and it would be impossible to put the clamp on it after it's in Bob's stomach. (I know this because the last tube Bob got, the one that popped out that morning, was the same type of tube and the doctor did not put a clamp on it and I could not get a clamp on it afterwards. Which really made it a pain to use though I did finally manage to jerry-rig a clamp on it.)

He tells me he doesn't know what I'm talking about. Why does it need a clamp? He asks. You just close the port opening, he demonstrates by closing the opening. 

I am thinking, this doctor is an idiot. Doesn't this guy know how these things work? Because the clamp is for when you OPEN the port opening, so stuff doesn't come running out of the tube.

Anyway, he closes the curtain around Bob but immediately comes back out and tells me that Bob's belly hole has closed and he can't get the new tube in so Bob will have to have actual surgery to make a hole in his stomach and then he asks me why didn't I re-insert the old tube after it fell out?

I told him I didn't know if I should do something like that, I was afraid I might make it worse, cause an infection or something and the nurse didn't say a thing about re-inserting it and I had told the nurse that the tube had completely fallen out. And he tells me that really someone should have trained me how to do this....

Then he tells me that he going to admit Bob into the hospital because he wants him taken off the Warfarin (blood thinner) before he does the surgical procedure. And this will take FIVE DAYS, and that's when I really start to freak out.

Because this is THE HOSPITAL that nearly KILLED BOB two years ago. And I am not very comfortable with leaving him alone there. 

Plus, the neuro doctor said to never, ever take Bob off the warfarin because he has a high stroke risk.

So, I tell this doctor this. Um, not the first part about nearly killing Bob but about the neuro doc saying never to go off the warfarin.

And he says, "well, how does he have surgical procedures done then?"

I say, "well, he hasn't had any surgical procedures done since the stroke."

He says he's going to call Bob's primary care doctor and talk to him. 

So we wait. I tell you, I am sick at the thought of leaving Bob at this hospital for five days. I'm thinking, I need to get a new gastro doc for Bob, one that doesn't use this facility, one who knows what a tube clamp is for, one without a bandaid on his head.... but it's sort of late now.

About a half hour later, the gastro doc comes back and says that he has spoken with a colleague of his who has an idea how to do the procedure while Bob is still on warfarin, and they are going to do it now in the GI lab with an endoscopy and some type of attachment to see if they can pry open Bob's belly hole from inside of his stomach. He is not sure if it will work. And if it doesn't work, Bob will have to be admitted to the hospital...

So off we go to the GI lab, where I wait in a room the temperature of a freezer. Part way through, the nurse comes running out of the lab and picks up the phone and tells someone about a "patient with a peg tube replacement and severe gastritis and bleeding" and I'm thinking, oh shit, now what?! And she hangs up the phone and walks right past me so I pipe up and say, "Is anything wrong?"

She says, no, she's just getting a prescription.

By now, I'm quite worried and 20 minutes later the doctor with the bandaid on his head finally comes out and tells me everything went fine but Bob has an ulcer and he's writing a prescription for that. A prescription, which by the way, when I go to get it filled is not covered by the insurance and costs $100.00. 

Finally, we can leave the hospital, Bob outfitted with a shiny new peg tube complete with a clamp.  I pay another ridiculous $20.00 for the ride, and when we get home, I get Bob into his bed and immediately he pees all over the sheets. So I have to get him back out of bed and change the sheets.

I tell you, by the end of the day, I was exhausted.

We skipped Rehab yesterday. Bob not feeling well and that was OK by me. I needed a break.

And today we are off to see the urologist for some more doctorly excitement. Bob has to be catheterized for yet another urine sample for a drug screen for Pain Management. This time, I am going to ask the doctor to teach me how to catheterize Bob so we don't have to keep running to the urologist every time Pain Management wants a cup of pee. I'm thinking to have this skill will come in handy on other occasions as well. Though I do hope I don't pass out. I am already a bit squeamish just thinking about it.

 But at least this trip will only cost $8.00.