Vacuuming

No, not vacuuming the floors or rugs, but vacuuming out Dennis' throat. Yes, there is such a machine and we do have one.

I suppose this is another way of saying that Dennis is having more and more difficulty swallowing every day.

Which also could be another way of saying that I am grateful that he has a feeding tube.

Dennis fought the feeding tube for a while, but he began to drop weight at a high rate, and finally agreed. At first it was a gravity feed or a bolus feeding. He wanted bolus feedings (carer holding a tube of food for 30 minutes while it dripped in) during the day, and then only sporadically. Then he began to complain of acid reflux. He went through all the medications that his part D medicare would allow, but no luck. So we tried feeding at night with Dennis' head slight raised. Still stomach problems.

Eventually the gastric tube was changed to a J/G tube and this required a feeding pump. The acid reflux disappeared. And, except for the clogging, the explosions of a tube full of water or sticky food, and the pump not working in the UK, it has improved his life immensely.

So, if you or someone you know, are having difficultly swallowing, there are options. They aren't pretty, they aren't easy, they aren't very often fun. But if there is a will to live, these inconveniences my be worth it for you, too.

And there goes the vacuum, once again.

Until later,
Ann and Dennis

A Practice Vacation

Today Dennis and I are filling another wish on Dennis' Bucket List. We are staying at the Nicollet Island Inn for the night. This is a historic building in Minneapolis, known for it's romantic get-aways. While we have eaten at the restaurant a few times, we have never checked in for the night.

It is also a test run for how to feed Dennis while on longer vacations.

With his new "J" tube, he must use a pump for his night feedings. We are really hoping that we can leave that at home when we travel. So tonight we will jerry-rig a pole to hang a bag from, and use the drip bags for feeding. The fear is we will not be able to set it at a slow enough pace for his intestines to take in the food and begin the digestion process before the emptying into the stomach. However, if it works, it will save us 20 pounds on luggage when we travel by plane.

We do have a letter from Delta (not our preferred airline, but the one we are stuck with in Minneapolis) saying we can check a bag for medical equipment at no charge. But this isn't really the problem - the issue is me loading and unloading a bag filled with heavy, but necessary equipment.

Here is an idea of what we take along:

1. Two diapers for each day. Not much weight, but lots of bulk.
2. Bed pads - same thing.
3. Pills (he is up to 25 assorted pills a day) and plastic tubes to inject the pills into his "G" tube.
4. A coffee grinder to pulverize the pills so they don't clog the tube
5. His computer for communication - while small in size, it weighs about 20 pounds.
6. His helmet and pads for walking. Lots of bulk, and the weight adds up.
7. His nebulizer - another 10 pounds. Perhaps we can get a script for individual neb treatments, but then we trade in bulk for weight.
8. Cans of food - he is taking in 3 cans of food each day and each can weighs about 2 pounds. This adds up on any vacation over 3 days.

So tonight is a practice night for saving 20 more pounds by not bring the feeding pump. Lordy, I hope it works.

Until later,
Ann and Dennis

New "Stuff"

After 2 months, the electric wheel chair has arrived. There have been a few stubbed toes and the machine cornered me in the doorway once, but there have been no broken windows or dented furniture so far. The house is quite filled up with movers and shakers - a manual chair, a walker and now an electrical chair.

A tall toilet also was ordered and installed after 3 months of waiting. Unfortunately, I found out this morning, after emptying Urina (night bag) that it wasn't sealed properly. It's so much fun to wake up in the morning and find yourself standing in a pool of urine. Wakes a girl up.

The feeding tube is working well, and Dennis has only thrown up two days out of ten. Yesterday he threw up quite often, but by the end of the day the acid reflux had ended. Last night, however, Dennis managed to unhook the feeder, and there is another mess for Ann to clean up today. It's probably too late to do much of a clean up - the food is very thick and sticky and dries quickly. Doesn't matter too much, the whole carpet needs replacing anyway.

A medical bed is supposedly coming in a week or two, and I have no idea what to do with it. Our bedroom barely fits our bed, and Dennis' office is filled with the remains of what Dennis is hoarding and hanging on to for dear life. We will need to deal with this issue this weekend.

It's a stormy weekend, and a good weekend to stay home and pout. Looks like I have just about enough stuff to fuss about to pass the rainy day away.

Until Later,
Ann and Dennis

Stressed Out

I have been bookmarking last minute disabled vacations. I figure, if we have a couple of weeks, we will have several choices to pick from, for last minute travel.

But then right smack dab in the middle of planning for the future, the present happens.

I have been crying, Dennis has been worried. Dennis has to poop, the PCA isn't showing up for work. I do not feel well (haven't for a long time) because I am exhausted and really, really need some time off. I have a month until work is finished (and I do know that is nothing), but I am exhausted and ready to stop everything right now.

Dennis is waking up at least 5 times a night, and now the feeding pump buzzes 2 or 3 times a night. I should be able to get that down to one time, but for now, I am lacking sleep, patience and desire to do anything.

So I am taking the week off from work. 30 days until I am done, and I am taking a week off? It's not only best for me, but also best for the kids. Not only am I not at my best, but I am so on edge that I catch myself saying and doing things that are not like Ms. Ann! At home, we are used to Ann being stressed, but at work, not so much.

So for this week it is napping, television shows to dull my senses, and a bit of peace.

Until later,
Ann and Dennis

Out Patient Surgery

From the immediate looks of it, Dennis' calorie issue may have been solved.

He had a new feeding tube inserted today. Yesterday he had an appointment with a GI specialist. This doctor decided that Dennis had the wrong type of feeding tube. Instead of one that feed directly into the stomach, he needed one that fed into the intestine. He was brought up to out-patient surgery and they inserted Novocaine into his belly. Then they asked when he ate last.

When I came home he told me they had been mean to him. They made him get shots into his delicate skin and then decided his stomach was too full to do the surgery.

So today he went back on a very empty stomach. When we left a couple of hours later, he had the newest tube on the market hanging out of his belly.

The gadget feels almost like silicone. It's tough, but soft. It has three separate places to insert junk. The "J" tube goes into the intestine. This is where food, and only food, gets injected. Then there is a "G" tube, where water, pills, and any other odd stuff get shoved directly into the stomach. Finally there is a balloon, which we were told not to touch under any circumstances. It's all a bit overwhelming, but we all will get it straight in a few days, and it will seem as if we have been doing this forever.

Dennis will now eat at night while he sleeps. This will leave him with several extra hours in the morning that he has used up slowly eating as much as he could for as long as he could. He will need to get a new hobby. Well, actually he has - he spent a small fortune the other day on a Nintendo DS. Now he can sit at the kitchen table for hours playing memory games and killing monsters.

Until later,
Ann and Dennis

Stomach Tube (G Tube) Blockage

I spent most of the day with my mother today. I left the house at 8:30 and headed for Eau Claire. The plan was to pick out a few more items for moving, a last visit with her doctor, before heading back to Minneapolis with Mother in tow. She is going to see her new apartment and have an assessment with a nurse tomorrow. Then Jane will drive her back home.

It was a long day. A 100 mile drive, twice. A visit to the doctor, who spends a whole lot of time with each patient. Mother and Father both love(d) him, but he is always behind on his appointments. Then, we packed for the night, but mom kept forgetting something. Anyhoo, it ended up being a long day.

When we returned to our condo, Dennis was due for a feeding. Damn, his tube was blocked. I reread the information given to us and tried to empty his stomach contents with suction. Nothing. I tried putting water into the stomach, with no success. I tried a new suction tube. I tried hot water. Nothing.

I called the hospital. I could not find the direct number and the receptionist, although very pleasant, couldn't figure out what I needed either. Eventually, I was hooked up with a guy that understood what I wanted. While he transferred me, he told me that inserting Coke into his tube might loosen the blockage. As my sister Jane said, "that says alot about what we are putting into our bodies."

I left a message and received a call back a short time later. Pump, back and forth, warm water into his tube. Much like rocking a car out of snow. Slowly, in and out, back and forth.

Thankfully, this worked. Dennis is still officially without insurance. Yes, he will be covered by my insurance, but the paper work is not processed, yet. It's best not to take him to a doctor until the official cards have arrived. I really do not want to face one more insurance fiasco.

Until later,
Ann and Dennis

Surgeries Completed

Both surgeries have been completed and have been deemed successful. He know has two tubes protruding from his lower belly region. I thought about posting a picture, but instead, I will let your imaginations run wild.

Our house looks more and more like a hospital room every day. There is a wheel chair and a walker. There are day and night urine bags. There are diapers, bed pads and disposable bed pads. Next to the bed is a hospital table. Now we have added one of those beautiful poles that bags hang from, complete with a pump. We have 5 cases of high calorie liquid food and one case of syringes. We have 40 iv type bags with a special "Y" closure.

Feedings are fairly easy. You always begin a feeding with 60 milliliters of water injected with a syringe into the stomach. Then, you can either directly inject a can of food and follow with water, once again, or hook up to the pump. When using the pump, you fill a bag with two or three cans of food, thread the pump, much like a sewing machine and hook it up to the stomach tube. It takes about 3 hours for each can to drip into the stomach.

The catheter pretty much works the same as the old one. Once he gets past all the pain he is in, I think he will find out that he likes the new placement.

The tricky part will be getting him dressed. One tube is directly above the pant line and the other right below. Hopefully this will be the only tricky part. I will do my very best not to hook the wrong tube into the wrong tool. I don't want to be feeding his bladder.

Until later,
Ann and Dennis

Until later,
Ann and Dennis