I still remember when my parents turned 40. I thought they were old. The gray hairs were coming in. Hairline started to recede. I think my dad went and got bifocals around that time. Hearing started to go bad. Nose and ear hair started to be an issue, as did 'regularity.'
It doesn't seem as old now as it did then. Maybe because so many of my friends are already in their forties (clearly, I need new friends). Maybe because I'm the youngest in my family and I still find that I'm treated like the 'baby brother' by my mom and sister (don't try to deny it!). Of course, the obvious reason it doesn't feel old is because I'm forty. Hell, when I was 10 years old, I thought college kids were ancient! It's all relative, right?
I would think that I'd be wiser by this time. Sure, I'm not the world-traveler my sister is. She lives in Europe, spent last Christmas in Kazakhstan and this Christmas in Israel. I live in Tennessee. My idea of a big journey this year was a road trip to Florida. Yet, I've had experiences. I've been to college, traveled out of the country a few times. I've overcome my share of health problems. I've raised a daughter (fairly well). Shouldn't I have gained some wisdom from this?
I wish I had something truly poignant and eloquent to share at the age of forty.
"Wear sunscreen." (sorry, that's from somebody else's graduation speech)
"There's no greater gift than friendship." (just watched The Polar Express with my daughter)
"Everything is awesome!" (The Lego Movie; all my quotes are from cartoons now)
"Do not taunt Happy Fun Ball." (old SNL skit)
"Don't put liquid dish soap in the dishwasher." (somebody else did that--not me)
If I've learned one thing so far in life, it's that I'm pretty ignorant. I had the opportunity to spend a weekend with my grandparents before Christmas.
They've forgotten far more than I've learned in forty years. My grandfather turns 95 next month. Forget 40! That's
a milestone. They've been married 72 years. Seventy-Two! Their marriage
has been a member of AARP more than twenty years! How could I write a
revelatory tidbit of wisdom that could compare to everything they've
experienced over the last century?
The secret to their long, happy marriage is the wine
I'll admit I've had some regrets in the last 40 years. I regret not learning a language. There's still time for this, I suppose, but it would've been so much easier if I'd stuck with German in college after two years in high school. Instead I took Arabic. Do I remember anything from Arabic class? Nope. I can say 'yes,' 'no,' I can call a room to attention, and say that the class is ready for instruction (we had to do that every day; I'm sure that will come in handy...NEVER).
I also regret not really talking to my brother about how he felt while he was going through cancer and not really listening to my sister when I was younger.
It's hard to regret decisions I made about my health. Do I regret getting radiation treatment? I could be worse off now if the cancer was never completely eradicated without radiation. Grace told me yesterday that she wished I'd never gotten cancer. I said that cancer was one of the best things to happen to me because it set me on a path to adopt her. Without radiation I probably wouldn't have met Grace. I'd still be in the Air Force (assuming cancer hadn't come back), but I'd never have met all our great friends in various hospitals or in Tennessee. Similarly, if I'd never gotten that last jaw surgery, then I could still be able to swallow, but I might be worse off too.
Without my regrets, I probably wouldn't have started writing a blog. I've discovered that I really enjoy writing. I might not be very good at it--my punctuation is atrocious (I think I use dashes and parenthesis far too liberally). But, I like doing it. It's cathartic for me. Hopefully, over the next 40 years (or however long I'm sticking around this place), I'll be able to watch Grace grow up into a happy, confident, young woman and I'll get better at writing about it.
Clogs are annoying. Depending on where I am and what my mood is, they can be SUPER annoying.
No, not these clogs.
Not these either (could've shared a really gross picture here)
I can't possibly claim to be the first to write about dealing with clogs
in the feeding tube. Eric O'Gorman has an excellent guide on his
tubefeeding blog YouStartWithATube.
He also has a section devoted to it in his book, Complete Tubefeeding. If you're confronted with a clog, I recommend you start there. I want to talk about the way my attitude shapes how I handle clogs.
Blendtec has been letting me down lately. I know, I can't believe I just wrote that either! Don't get me wrong, Blendtec's customer support has been superb. They've sent me a free blender and two free containers. I make Almond butter all the time in my Twister Jar. The Wildside Jar is perfect for large dinners when I eat out. It's been extremely convenient to tell restaurant chefs to just hit the 'Soups/Syrups/Fondues' button and let the blender do the rest. Up until a couple months ago, this has worked perfectly.
But lately, ever since my trip to Snowmass, Colorado, the blends haven't been smooth enough. This always happens when I'm away from home too. The latest incident was in North Carolina. My sister and her two little boys came to visit from Nürnberg, Germany, last month. We went to visit our grandparents over Memorial Day weekend and stayed in a cabin near their house.
Superman--the kid on the left--likes to randomly say "UNDERWEAR-SOCKS" or "BUTT-NUTS" What's up with that?
Three cousins with their grandparents. Hard to believe how different Grammy' & Grandpa's lives were at Grace's age.
Four generations. My big sis is on the far left and Aunt Susan is on the far right. Why's there an Asian kid in the photo??
My sister loves to cook and made some really delicious, elaborate meals during our stay. The last night, we grilled out at the cabin. I put a buffalo burger, salmon, butternut squash, and broccoli in my Blendtec for dinner. As usual, I hit the 'Soups/Syrups/Fondues' button. I've never had a problem with broccoli in my blend, especially cooked broccoli, but this time there were still chunks left over in the blender. I thought I could force them through the tube if I pushed hard enough, but no such luck. I had numerous clogs. Each time, I would refrain from pushing hard enough to cause a complete mess--I've learned my lesson there. I dumped out the syringe-full that I couldn't force through my tube, walked to the sink, and cleaned out my syringe. The offending chunk of broccoli was too large to get through the syringe and get stuck in my tube. This actually made it easier to clean out because I didn't have to deal with food caught in my tube. I put the pitcher back on the Blendtec, and ran it at a high speed for about half a minute. I thought everything was smooth enough, but when I sat back down and tried eating I quickly had more clogs.
I got so frustrated that I finally just gave up eating the dinner,
dumped out my blend, and had an Ensure that I brought on the trip. Only
problem is, I failed to close the side port on my feeding tube after I
cleaned it at the sink. So, when I poured the Ensure into my tube, I
dumped a large portion of it in my lap (see handy diagram below).
I frequently wet my pants.
Perfect.
Meanwhile, the rest of the family already finished eating, cleaned the kitchen, and they were singing and dancing next to the table. The whole time, while I was dealing with numerous clogs, I kept my mouth shut and avoided complaining. I'm more 'the quiet one' in the family. I normally don't contribute much in the way of conversation. Part of the reason for my silence is that I'm harder to understand and I get out of breath when I talk too much. Another reason is that we were always taught to 'be tougher' growing up. Complainers were looked down on. The very best people in our view could get knocked down, pick themselves up, and keep fighting without a word. My grandfather is the epitome of stoicism. He's a self-described "man of few words" who lived through the Great Depression and was awarded both the Silver and Bronze Stars during World War II. Another reason for my silence is I'm pretty non-confrontational. I don't like to make waves or cause a big scene if I'm having trouble eating. Anyway, that's more stuff to talk to a therapist about, but the problem with suffering in silence over clogs is that the frustration and embarrassment--not to mention the hunger--builds up inside you and can make dealing with the problem ten times worse.
I've found that overcoming clogs is so much better when I talk about it openly with the people around me and look at it from a humorous perspective. It also helps me immensely to be part of tubefeeding groups online and swap clog stories.
I recently asked a couple groups I follow on Facebook if anybody had any really good clog stories. I got some fantastic responses!
Shifra
shared this story: "Oh gosh, where haven't I spilled the feed!!!
When we did gravity feeds we spilled it everywhere. Now that we push the
feeds it's much better. I think the worst was in the car when I was
feeding my son and somehow it spurted out onto the ceiling and all over
me and him. That was a huge mess. :-( "
Megan writes, "My feeding tube got clogged with riboflavin (which turns cement-like if you don't mix it with enough water) and when I finally pushed hard enough to get it to unclog, it went, well, everywhere :)" Megan was kind enough to include pictures so we can fully share in her misery:
We call this "getting baptized"
Katelyn said, "I get so frustrated with clogs (lol) I literally have temper tantrums like a little kid. Yesterday I got clogged and we tried to flush with coke and it literally sprayed ALL OVER the bathroom. Like, full 360 spray covered the entire bathroom and my husband. He just looked at me and shook his head. Was a good time."
DO NOT TRY THIS AT HOME, but Courtney told a very entertaining story to the group, "This is going to sound bad, but my friend told me nutmeg can get you high (I get rx med marijuana for seizures but didn't have another rx until the next visit) so I just dumped the nutmeg in without water and then I put water in the syringe. Basically did everything ass-backwards. Had to get my mom to help me unclog it. Worst lecture of my entire life. She used a turkey baster to get most of it out :o thick shit gets clogged easily, my suggestion would be use warm water to thin it down. I heard about carbonated drinks helping getting tubes unclogged but I hate that feeling."
Another story comes from Stephanie: "I had a carrot stuck in a cranny of my GJ connector for a month. Also, my dad found me fighting with my G tube standing over the toilet and asked me what I was doing...I told him my G tube was clogged. He asked me how I clogged it...I had eaten some pizza the night before and there was an undigested red pepper floating around in my tube the next morning! Luckily I got it out!"
Kelly sprayed a blend across the room and into her husband's guitar.
Rachel shared this incident: "My husband was feeding my son in the waiting room at an appointment while I registered him. I walk back over to them and my husband says, 'Can you take care of that,' while pointing at another child in a stroller near us. There was a spray of [blended diet (BD)] all over the back of the stroller. As an added bonus, the family was not native English speakers."
Rebecca is another caregiver to a tubie: "Our 21 year old son has "girly" posters on the ceiling in his room. I was trying to get his j-tube unclogged (formula) and sprayed a group of his beach beauties. Not quite the spray tan you hear of...."
Jen said, "Our first month of BD was at an [ICU]. The first day of the diet, I ended up spraying not just any ceiling but the hotel's popcorn ceiling. It wasn't an easy explanation to make about why a green substance was on the ceiling!"
Lindsey had a couple stories: "I was in target and the pump kept beeping...I finally took pump and bag out of the backpack to inspect. I squeezed the bag too hard and the top flew off from the pressure and covered me including face and hair, my child and the contents of my cart..."
"Or there's this one...just a good ol' syringe flying out of the port this time."
More immersive baptism
Jayne writes, "We were feeding our daughter in a cafe whilst eating lunch with our other 2 daughters. The blend had beetroot in it so it was very red. We hadn't connected the extension tube correctly and so 2 x 60mls of bright red food was pushed "onto" her stomach. She looked like she had just been shot and was bleeding!! Made for a very messy cleanup!"
Finally, here's a non-clog-but-still-messy story. Sarah was, "sitting at a friend's house, on her nice black suede couch, daughter on lap, feed running. Suddenly I feel very wet, pick her up and I was soaked--along with her couch! I guess that's not a clog story, but it was so embarrassing, I had no idea what to do! There really wasn't any way for me to clean it other than trying to soak up what I could. She was so nice about it too, she had 2 little kids and said the couch wasn't new or anything and had spills and thrown up on it enough already it was no big deal. I couldn't help wishing I could clean it better though. Much more careful about where that connection is now...."
If you have one and you'd like to share it on the blog, then please respond in the comments. The most important thing, when dealing with a clog, is to have the right attitude. You're not alone! We've all been there! Laugh it off and share it on one of the tubefeeding forums so people who understand can laugh at you...er...I mean laugh with you...we're laughing with you...not at you.
