Tubular!

Maggie’s room is not designed to be a bedroom. It was the breakfast room of this house originally. It is on the main level of the house and has been reconfigured to meet her needs as best we can (there’s still no closet). Her room opens right on to the deck, which we added along with the outdoor lift/elevator. We also reconfigured the bathroom to add the shower. It is getting more and more difficult to get Maggie into the shower these days (more bed bath than showers lately). That shower comes in quite handy, though. We use it to dry various tubes we need for Maggie’s care. The shower resembles a pasta rack, with tubes hanging everywhere. 

There are hundreds of tubes in Maggie’s room all the time. We have oxygen, nebulizer, humidification, and suction tubing. We have three types of feeding tubes, catheters of various types and or course the trach tubes themselves. There are also the things attached to the tubes on both ends, the canisters or the various tips.  They are all essential to Maggie because they provide a means to give her what she needs (food and meds) and take away what she does not.   

 Every single tube as well as the machines to which they are attached are breeding grounds for bacteria. Some of the tubes are so bacteria filled they simply have to be thrown away every day or after a single use.  Most, however are re-used for a month or more. That means they have to be cleaned very well ever day or Maggie will get very sick.  If you look in Maggie’s bathroom you will see some tubes soaking and other hanging to dry form the showerhead and any other handy spot.   

Getting the tubes really clean and bacteria free takes more than soap and water. Soap and hot water is just step one.  After the tubes are washed, many of them, especially anything used for respiratory issues, have to be soaked in a vinegar solution.  Vinegar is a natural bacteria fighter.  We use  one part vinegar to three parts water and we change the solution frequently. That means we go through a LOT of vinegar.

Every couple of weeks I head to a nearby store that sells large quantities. Not a warehouse store per se because that place seems to sell only gourmet vinegar. There’s nothing gourmet about what we are doing and no need for the extra ingredients (or extra price). Just the plain white vinegar for me, thanks. I buy two or three gallons at a time.   I don’t really need anything else at this store so it’s generally the only thing in my basket.  Often I get strange looks from people as I put my three gallons of vinegar on the conveyor belt. Once in a while someone asks why I’m buying so much vinegar and I tell them, but generally I just get quizzical looks.  The looks are not unkind or inappropriate,  just quizzical

The other day I was loading gallons of vinegar into my cart when I saw that look from another shopper. Our eyes met briefly and I think she was just about to ask. She was placing a large package of spaghetti into her cart. Unbeknownst to her, the package was opened and as she was looking at me dried spaghetti noodles were going all over the floor. Now my eyebrows went up. She looked down at the now empty package in her hand and the mess on the floor and gave the greatest me the greatest look ever. It was resigned, exasperated and amused all at the same time. I very dryly said, “I wouldn’t buy that one if I were you.”  We both laughed. I moved my basket heavy from all vinegar and the spaghetti noodles crunched under the cart. We both started laughing at the sound.

I proceeded to the checkout still laughing and mentioned to the checker that there was a problem in the spaghetti aisle. He nodded and said, what’s with all the vinegar?

This BUGS me!

Maggie has had a stubborn infection for over two months, maybe longer. She first tested positive for this particular bug in September. It was back in November and has been with us ever since. Ir it has gone and come back. Is it stubborn or recurrent? Who knows? We have tried six different antibiotics. While she is on them, she is fine. As soon as they stop, the symptoms start again.

I tried several times to convince the docs of this, but it fell on deaf ears. All I heard was “no, she’s just getting one illness (read: “cold”) one after another.” I don’t think so. At this point in caring for Maggie, I do not run to the pulmonologist for a cold.

After the last culture grew the same bacteria AGAIN I left a lengthy message about the pattern we have dealt with over the past 60, 90 120 days. They are paying a little closer attention now. Maggie is on three antibiotics. And right now, she is fine. (Ask me when they finish but that will be 21 days.) We are attacking this bug head on.

On Friday afternoon, the nurse from Pulmonology called and very gently suggested the possibility that the bacteria could be here, in my house. Whaaaa? My first thought was, “ Of course not. We take excellent care of her.” And indeed, we do. But the nurse asked, "How often do you change the tubing?" The bacteria could be living in the tubing, especially the tubing that is wet. Well, we change it regularly, of course. How often is regularly? Uh, every couple of weeks. But not the oxygen tubing. That’s less frequent. Oh, am I supposed to change that too? Oh, should I try every week.?

I agreed to consider the possibility.

I have not thought of anything since.

EWWWWW. Of COURSE, it is possible. And, dare I say, probable. Again, EWWWWW.

So now, we are “CSI, stenotrophomonous.” Where are you little microbe? You can run but you cannot hide. Well, yes you can, but now we are looking. Talk about a needle in a haystack. This is more like a needle in a field of hay, or several needles in a field.

Let me just list the tubes in Maggie room. All are on a sliding scale of possible suspects. No that is too ridiculous; I will categorize them instead. There are several categories:
1) the “not likely” which includes gastrostomy tubes and urinary catheters;
2) the possible, including nebulizer tubing and suction tubing;
3) the very likely, oxygen tubing, mist/corrugated tubing, and
4) the obvious: suction catheters (three different types).

In addition to all of those, there is the water in various containers. The water for the mist and the waterthat we clean the suction stuff in and the containers in which both sits. There is the little bag that works with the mist machine to collect the additional water.

All are on my hit list. And there are probably 15 other things I haven’t considered.

I’m sorry; I know this is too much information. But this is how my brain has been working for the past three days. I am a woman on a mission. I have boiled water, vinegar mix and attitude and I am not afraid to use ANY of them.

Be afraid little bug. Be VERY afraid. Your days are numbered.