It what's for dinner

Grandma Carmel came over for dinner on Saturday night. It was very casual. Things were in disarray from the work in the kitchen and the half decorated Christmas tree. We just pushed the mess aside for awhile and sat down to eat.

On Friday morning I told Maggie that Grandma was coming to dinner and asked if she wanted to help me cook. Of course, there was a resounding yes! to that question and her excited arm movement that foes along with it. I explained that the first thing we had to do was decide what to cook and made several suggestions. All suggestions met with rejection from Maggie.

Chicken? No!

Roast beef? no!

fish?no!

pasta? no!

Hmmmm. I started on other things pigs feet? No! [good – never had ‘em], chicken lips? No! (with a huge laugh.)

In mock exasperation I said,”Maggie, we have to eat something, what to do you suggest? That we all have Vivonex?” This brought uncontrollable laughter and yes! yes! yes! Vivonex is Maggie's’ food. It comes in 250ml cans and she is fed every two hours. According to the can Vivonex is ,“medical food for tube feeding or oral use” (she is strictly a tube feeding girl) and it is “formulated for maximum tolerance.”

YUMMY! This is exactly what I want to serve at a dinner for my mom.

I promised Maggie that I would put a can at every place and she was beside herself with laughter when I followed through.

Sometimes I have to stop and be amazed at the life Maggie leads and how I take it for granted. She doesn’t get to taste anything , doesn’t get the joy and camaraderie of dining out or dining at all. Her food has to be prescribed by a doctor and is delivered by a medical supply company every month. We had to go through many different manufactured foods before we found one that worked. Maggie’s intense allergy to milk products coupled with her delicate constitution severely limited her choices, even in the world of medically prescribed food. After various trials and errors, the GI nurse practitioner prescribed Vivonex. Turns out that maximum tolerance thing works!

I'm delighted too find a food that works, but that's not the amazing thing. More amazing is that Maggie doesn’t care about any of that. She is happy to be part of the action even if her seat is two feet away from the table.

If I knew it would make me as happy as Maggie, I would happily switch to her food. However, I'm not sure I have the same positive outlook that she does. Vivonex is manufactured by the Nestle corporation. I’m glad they make this stuff, but I think I’ll stick to Nestle’s crunch bars, if it’s all the same to you.

Things that go BUMP in the night

Rough night last night. I had to get up to help the nurse at 2:30AM and never got fully back to sleep after that. Every time I started to drop off I would feel this rush of adrenaline and find myself wide-awake, heart racing.

It is not as though the assistance needed was life and death or anything like that, but happily, it has been a while since I have had to get up from a sound sleep to address a medical need. I guess I’m out of practice and could not just shut off the adrenaline as I used to.
I was in a dead sleep dreaming about someone trying to get me up and realized the nurse was yelling my name. That was disconcerting. We have two phone lines in the house and when they need help they call from the fax line extension in Maggie’s room and it rings right next to our bed. When I realized she was yelling I thought it was something too serious to spend time dialing. I flew down the stairs.

Maggie pulled out her gastrostomy (feeding) tube. It’s in her stomach in a surgically created hole (or ostomy) and it stays in place by a small balloon filled with water. You insert the tube with the balloon deflated and fill it up with a syringe once it’s in place. Filling it is painless; having it in there is painless. Pulling it out, with the balloon inflated is not. Maggie has done it before, but not very often. She had that shocked sheepish look on her face when I arrived at her bedside. It was a combination of sorry and YEOWCH!

The nurse was poised for action, though she was ready to rip open a box of extension tubes rather than the tube we needed. I looked at the tube Maggie had pulled out and decided to just put it back in, as it was not broken. I only have one spare right now that we are keeping in Maggie school bag so it is always with her. Usually I have a couple, but I am waiting for a delivery. No sense using the only spare if we do not have to. I deflated the balloon, reinserted it, re-inflated the balloon and gave Maggie a kiss.

I asked the nurse why she didn’t just use the phone and she told me both phones were dead. She could not get a dial tone on either one. Now that was curious. I picked up each line and the phone was working perfectly. Now it was her turn to look shocked and sheepish. I padded back upstairs where Steve was sleeping soundly (grumble). As I was getting back into bed, I CRASHED my knee into the blanket chest at the bottom of the bed. Now my face had the YEOWCH look, and I woke Steve.

Overall, it was much ado about nothing. The nurse could have handled it herself, but it was fine she called me. I just could not settle back down. I got up early, showered, and dressed before coming downstairs at 6:30. Undoubtedly, I will hit the wall later today, but other than my slightly bruised knee, I am getting a lot done.

Of course, at 8:30AM the afternoon nurse called to cancel.

Ironically, her knee hurts.

Mom, I forgot my Lunch

Maggie left for school this morning as usual. We did the crazy "get out of the house before the bus comes" dance.

For an extra special addition to our routine there was the rain to deal with. Just as we were headed out the back door, the heavens opened up and we were forced to head down the outdoor lift in a downpour. I found an umbrella small enough to fit inside the lift with us and held it over the two of us for the S L O W ride to the ground floor. The elevator's top speed is 9 ft per minute, and it doesn't really go top speed in the pouring rain. Despite the umbrella, we were both pretty wet by the time we got down. Once we were in the garage waiting for the bus the rain let up a bit. Figures.

Maggie left and I came in to get a start on my 1,000 projects that needed attention. About 30 minutes later I was already at the computer working when the nurse called from school. Maggie did not have a feeding tube. The nurse sent home the feeding tube yesterday because it was grungy and I didn't put in a replacement. I had one in my hand before Maggie left, but I got sidetracked and never put in the bag. Also, i didn't realize there was only one tube at school. G R E A T.

This isn't like a kid forgetting their lunch and having to scrounge from the other kids, Maggie doesn't eat anything by mouth. She cannot eat or even have water without the tube. She needs to be fed every 2 hours. I just had to go. I had 40 minutes to get to school with a couple of feeding tubes before her 10:00AM feeding.

Projects were put on hold - again - and I set out across town to Maggie's school. I walked into her classroom holding up the tubes saying "who's hungry." Maggie laughed uproariously. (Gotta love a kid who laughs at her moms' lame jokes).

For those of you wondering, Maggie has a gastrostomy tube, fondly referrd to as her G-tube. There is a device surgically placed in her stomach that lies flat against her belly. Whe we need to feed her, we just pop it open and put the feeding tube in like a key in the lock. You attach a syringe to the tube and pour the food right in. Here are picutres for the curious. They are artfully arranged on top of my checkbook for contrast.

The food she gets is prescribed and is a medically concocted formula that is a perfect nutrition. YUMMY! We feed her about 6 ozs every two hours, and I can do that with my eyes closed. She needs the calories but cannot handle more volume than that at one time. Hence the frequent feeds.

At night she is hooked up to a pump and the food goes in while she's sleeping. We could do that while she is awake, but Maggie LOVES to fiddle with the tube and would unhook it 20 times a day and laugh maniacally at the mess she could make. She does that about twice a week at night as it is. The pump continues to deliver the food, but if Maggie has unhooked the tube it just goes all over the bed. HILARIOUS. Nothing like changing sheets in the middle of the night. Now we have layers of protective stuff on the bed and just peel off the layers as they get wet. Ingenious, I tell you.

So I lost my block of computer time this morning. My projects were delayed. In fact it's now 6:00 PM and I'm just sitting down at the computer again - other than quick emails mid afternoon. Somehow I think nothing much will get done now. Maggie's home and I have to keep jumping up to help the nurse with this or that. (In fact, 13 minutes have elapsed since I started this paragraph.)

Oh well, there's always tomorrow. Unless some other random tube or piece of equipment is missing.

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.