A day in the life

This is one I’ve been thinking about for a while: taking a page from one of my favorite writers, ESPN.com’s Bill Simmons, and doing a running diary of a typical day for me, with Sean and the rest of the fam.  Not that there’s really any such thing as a typical day – each day has its own variations, its own minor crises.  But I wanted to give you a window into the experience, so I’m taking today, Monday, 12 April 2010, and documenting it step-by-step.

Here we go …

5:59 am – Alarm.  Hit snooze button.  Wife doesn’t object.

6:08 – Alarm again.  Ugh.  Nina beats me to the button.  I’m sure she gives me a look of pity as she gets up, but my eyes are still closed, so I can’t confirm.

6:17 – Alarm.  Whimper …

6:26 – Okay, I give up.  I peel myself out of bed.

6:30 – I go to the kids’ room, tell Charlotte to get out of bed and get dressed, and move Sean to the edge of his bunk so Mom can change and dress him.  (Me telling Charlotte to get up is crucial.  If Nina tells her, she thinks there’s room to discuss it.  If I tell her, she knows she’s got 30 seconds max before I pick her up bodily and set her on the floor.  I’m a mean, strict Daddy.)  Also, I roll Sean’s feeding pole (a typical IV pole on wheels, only with a Zevex enteral pump attached) out to the living room and set it by the sectional sofa.

6:35 – Shower.  Aaaahhhh …  How did the human race survive before hot running water?  I imagine half-awake Cro-Magnons stumbling out of their caves, only to be stomped by mammoths they were too drowsy to see …

6:55 – Dress, comb and gel hair, take my multi-vitamin, fish oil capsule and B-12 (the last a new addition – I need the energy), pull out some towels for Sean’s bath (more on that in about three hours) and put his bath chair in the tub.  By now, I’m pretty close to sentient.

7:05 – Set up Sean’s breakfast feed – attach a feeding bag to the pump, attach a Mic-Key extension (the part that hooks up to Sean’s gastric tube) to the feed bag nozzle, fill it with 1⅓ 250-ml cans of Nutren-B formula with Fiber, set the pump to 250 ml and prime it (that’s why I put in the extra ⅓ can, to give wiggle room for priming).  Also, I boot up the PC.  It takes 10-15 minutes to warm up, run its cycles and be ready for use.  (To answer your questions: seven years old; yes, we’re getting a newer one; before this month is out.)  Meanwhile, Charlotte kicks back and watches Arthur on PBS.  Childhood is truly wasted on the children.

7:30 – Nina and Charlotte leave for school, and I go in to see if Sean is awake.  He’s in process.  I put on a VeggieTales CD to gently rouse him.  He probably enjoys this about as much as I enjoy the snooze alarm.

7:35 – While Sean slowly returns to consciousness, I make myself a quick breakfast – peanut butter on toast, banana, pear.  Still tired, so I forget to get a can of Wired from the fridge – catch-22.

7:40 – Time to lift 57 pounds and hold for at least 30 seconds, i.e., pick Sean up and move him to the couch.  Said couch has already been prepped with two pillows (head and foot), two towels (to keep Sean from wetting the cushions), a syring containing 5 ml of levocarnitine (for muscle growth) and 2.3 ml of ranitidine (Zantac), and the feeding pole.  Within five minutes, I’ve hooked up the feed tube to his gastric tube (the latter having a button setup similar to a beach ball), medicated him, started his breakfast feed and turned on Clifford, the Big Red Dog.  PBS will stay on until 10:00.

7:45 – I get a little time to myself – kind of, since I’m in the office next to the living room so I can still keep an eye on Sean.  Eat my breakfast, read the online comics and check the sports and movie news.  Yeah, the Steelers trading their black player who’s in legal trouble while keeping their white player who’s in legal trouble does look a little fishy …

8:15 – Just as I head to the kitchen to prepare the rest of Sean’s meds, Sean manages to half-tumble off the couch, despite the chair I’ve put there to block him from doing just that.  Legs are off, head and torso are on, and he’s managed to turn over 90° from his original position … without interrupting the formula feed or missing a second of Curious George.  Sigh.  I lift him back up, reposition the chair and hope for the best.

8:17 – Into the kitchen for medicine mixing.  The lady from Social Services couldn’t believe it when I told her that administering Sean’s meds took 25 minutes a day.  But it does – and most of it is right here in this block.  Aside from the levocarnitine and ranitidine, Sean daily takes:

  • Co-enzyme Q-10, 100 mg
  • Vitamin E, 200 IU
  • Vitamin C, 250 mg
  • Pyridoxine (B vitamin comples), 50 mg
  • Biotin, 10,000 mcg

And since he can’t swallow something as large as a pill yet, all of them have to be reconfabulated to administer via syringe.  And that’s where the fun starts:

  • The Q-10 and vitamin E are oil-based, so you can’t mix them with any of the other (water-soluble) meds.  They’re also gel capsules.  I pour 1-2 ml of olive oil into a small specimen cup (the kind that comes with liquid cold medicine), poke a hole in each capsule with an upholstery needle (you need a sturdy needle; regular sewing ones will bend), squirt the contents into the oil, and mix up with the needle like I’m beating eggs.  Then suck the mixture into a 3 ml syringe.
  • The C and B-complex vitamins are in pill form, so I have to grind them up in a pill crusher, heat up some water in the microwave, mix a little water into the powdered pills (using the *other end of the upholstery needle) and suck it all into a 10 ml syringe.
  • The biotin is a real headache – it’s two capsules, it’s messy, it doesn’t dissolve well, and it’s too volatile to mix with the vitamins (the vitamin C makes it foam).  After six-plus months, the best solution I’ve found is: take apart a 10 ml syringe, open the capsules, pour the biotin into the syringe cylinder, insert plunger, carefully turn over syringe, hope like heck it doesn’t poof all over the place, push plunger down so only a little air is left in the cylinder, insert the business end of the syringe in the hot water, suck up as much as you can (while hoping the little rubber deelie doesn’t come off the plunger, ‘cause if it does you have to start from scratch), shake syringe while covering the tip with your finger until it’s at least sort of mixed.  Somewhere in the process, you have to resign yourself to getting at most 80% of the stuff into the patient.  Don’t expect perfection; that way lies madness.
  • Oh, and one more 10 ml syringe full of clean water, to flush all the other stuff out of the feed tube and into Sean’s tummy.

8:35 – I bring the tray with the syringes into the living room, only to find that Sean’s legs are inching off the couch and toward the floor again.  He can’t walk or stand without someone’s help, so I’m not sure what he wants to achieve.  I put his feet back up on the couch, turn off the feed pump (it’s flashing DOSE … DONE … DOSE … DONE …), and one by one, hook each of the syringes up to the auxiliary opening in his feed tube and squirt in the goodies.  (Oil mixture goes first, the clean water last.)  Then I reposition the chair again (hope springs eternal) and let him finish watching Sid the Science Kid.

8:40 – Back to the office to type up all the morning’s activities, pausing occasionally to put Sean’s legs back on the couch before he hurts himself.  Dude’s got the fidgety feet today.  Meanwhile, I feel guilty for not having the dishes done (when?!?) and not doing more with Sean (even though he’s not capable of doing much more, and wouldn’t want to miss his PBS shows besides).

9:45 – Time to do setup for the rest of the morning.  I move a clean diaper, wipes, a spare pair of pants and Sean’s toothbrush and brushing cup into the bathroom, and lay out a blanket and pillow on mine and Nina’s bed, also making sure I have an adequate number of toys and books in our bedroom.  (This will all make sense in a few paragraphs.)

10:00 – Bath time!  I bring Sean into the bathroom, set him on the towels I’ve laid on the cabinet there, and get him out of his clothes.  He’s peed through his pants (not unusual; most of his elimination processes seem to take place in a three-hour space in the morning) and made a bowel movement.  The latter is usually a good sign, since a) it only happens a few times a week, since he’s b) on a mostly liquid diet, and c) going through his second growth spurt in less than a year, plus d) he’s had occasional constipation problems.  We’re taking the blessings where we can find them, no matter how … fragrant.

Anyway, once he’s stripped and wiped, I transfer him to the bath chair and turn on the water.  Sean used to hate being in the bath chair, but he seems resigned to it now and is quite cooperative.  I get him soaped and rinsed, scrub around the gastric tube site with a Q-tip, even brush his teeth (which he really dislikes, but at least he doesn’t try to yank the brush away from me anymore).  Then out of the chair and back to the cabinet, where I dry him off and dress him (including a new, dry pair of slacks).

10:25 – Wow, a new record for bath time!  Way to go, Seanster Monster!  I transfer him to my room, then take a few moments to clean up the bathroom and deposit the wet pants in the washer.

10:30 – Time for exercise.  Over the last several months, we’ve developed a full suite of stretching and flexibility maneuvers to put Sean through in order to get him moving and hopefully revive some of his muscle memory.  I won’t go into all the ones we do (as I’m not at all sure I’m getting the names right) but I work his legs and arms in different directions, flex all the major joints, and even help him do “sit-ups” (basically, I hold his arms out in front of him so he can pull up from a lying to a sitting position, the fold them across his chest and hold his legs down while he returns to prone).

We take about fifteen minutes on those, then I introduce a newer element: having him stand, supporting himself with his hands on my mom’s old cedar chest (a family heirloom that Nina and I keep at the end of our bed).  Sean manages to stay upright without help for over five minutes, by far the longest he’s ever done!  Wait ‘til I tell the therapists at Hoover M.T.U. about this on Wednesday.  (Should also tell them about the physical-therapist romantic comedy that’s coming out next month …)

10:52 – After all that exercise, Sean’s earned a rest.  I lay him down, help him turn onto his side and crack open Rudyard Kipling’s Just So Stories (gotta respect the classics).

11:05 – As I’m reading aloud “The Cat that Walked by Himself,” Sean has drifted off to sleep.  This doesn’t happen that often, but he is going through a growth spurt, and he was up fairly early this morning, so I let him doze.  This gives me the opportunity to make a couple of phone calls and straighten out a little problem.

Remember how I mentioned earlier that we’re planning to get a new computer?  Well, we tried to order it Saturday at the HP website … only to have the order declined due to a problem with our Visa card.  (Cue ominous music.)  So I called the credit union this morning and found out what the problem was: the daily spending limit on our card is $1500.  Our HP order was … wait for it … $1502.05.  You can’t make this stuff up.  Anyway, the credit union gave us a 24-hour boost on our credit limit, I called HP, and they processed the payment.  By the end of this month, I hope to be typing this on a not-top-of-the-line-but-better-than-our-current-hooptie PC.  Huzzah.

11:30 – With that imbroglio cleared up, I go to check on Sean and, surprise, he’s awake again.  (Short nap.)  We finish the Kipling – he liked the pictures of the cat – and go on to the straight-leg lifts, probably the least-enjoyable part of his day (even more than the tooth-brushing).  Frankly, they’re not much fun for me, either.  But they’re really good for his legs, and we’re both learning to tolerate the short-term strain for the long-term gain.

11:55 – Okay, enough physical labor for our Seanster.  I carry him to his wheelchair, strap him in, park him in front of the TV, hook him up for lunch (300 ml this time), and turn on PBS for the afternoon block of BarneyCaillou and Martha Speaks.

12:00 pm – With Sean’s lunch pumping away, I’m free to clean up the bedroom and living room (putting away all those pillows and towels) and start a load of washing.  Then I can relax for a little – have lunch (chili, tortilla chips, an apple … and that long-promised can of Wired), do some reading on the Internet, go through the mail (all junk today except for something from Social Security for the Supermodel).  Time to refresh for the afternoon.

12:28 – Mmmm … berry flavored Wired …

12:40 – Conan is going to have a new show in November on … TBS?!? Ho-kay, TBS …

1:00 – Sean’s lunch feed wraps up, so I give him his second dose of levocarnitine (he gets three a day) and a water flush, and unhook him.  He’s now unencumbered to watch Martha the talking dog expand her vocabulary.  (Gotta love PBS – shows you’re not afraid to let your kids watch, educational value, and the only products they promote are books.)  Then I dump the finished washload into the dryer and play catch-up on this blog entry.  I’m making this sacrifice for you, dear reader.  You’re worth it.

(Still feeling guilty about the dishes, though.  Gotta get to those …)

1:30 – The TV goes off, and … well, usually we’ll go out on the porch for some fresh air, sunshine and people-watching at this point.  Problem is, it’s been raining on and off since yesterday, and it’s a little cool outside – fine for me, but Sean can’t move around to stay warm.  Still, it’s not raining right now … hmmm …

I decide to chance it, and it works out.  While Sean watches the occasional pedestrian or automobile traipsing down our street, I talk to him while assembling the new electric lawnmower I purchased over the weekend (the one I realized last week I desperately needed).  The only worry isn’t the rain – it only sprinkles a little while we’re out there – but whether my longest extension cord will be long enough to allow the mower to reach the back corners of the lot on which our house sits.  Time will tell – anyway, with all this rain, the earliest I’ll be able to try it out will be Wednesday.

(And if you’re wondering how we’ve been able to afford a computer and a lawnmower, three words: federal tax return.  That, and buying fairly inexpensive ones.  And having not bought one of either for several years.  We’re doing the best we can, folks.)

2:20 – With the mower assembled and the rain starting to pick up, we retreat inside to do a little more typing.  Sean is looking pretty chipper, even smiling.  I ask him if he’d like me to bring up some music on Rhapsody, and the smile fades, which I guess means no.  So I write a little until …

2:45 – … the dryer buzzes to indicate it’s done.  I go and unload it, dump it on my bed and Sean and I do some folding.  (Well, I did all the grunt work; Sean supervised.)  WE get his and his sister’s clothes squared away along with the towels; Nina and I will fold ours later.  The count for Sean: two shirts, a sweater, three bibs … and six pairs of pants.  Told you it wasn’t unusual for him to pee through them.

3:05 – Sean looks pretty bored.  We head to the living room, and I go through the kids’ collection of VeggieTales DVDs to see which one has been played into the ground the least.  Ah.  I pop on Minnesota Cuke and the Search for Noah’s Umbrella, park him in a good spot for viewing and … drum roll, please …

3:15 – DISHES!  Yeah, bet you thought I’d never get to ‘em, huh?  I manage to plow through most of them, including the majority of the dirty syringes (darn difficult to scrub inside).  Nina and Charlotte come home at 3:45, so I get to trade “how was your day?” stories with the wife while finishing up.  Nina graciously offers to hook up Sean for his 4:00 feed (another 250 ml).

So, you might be thinking, Ray’s wife is home – must be time for him to kick back, yes?  Eh, no.

4:05 – With the dishes out of the way, it’s time to start cooking dinner.  (Yes, I cook dinner as well as wash dishes.  If you ask nicely, I’ll also do windows.)  I’m keeping it simple tonight –four-cheese macaroni with diced Polish sausage, plus celery sticks and sliced cucumber for the veggies.  Meanwhile, Charlotte works on her homework.

4:35 – Dinner is served, and praised.  I even get Sean to let me put a piece in his mouth (not easy, as he has trouble opening it), as we’re trying him out more and more on solid foods.  He likes it so much he keeps looking back at my plate, and takes another three pieces.  I tell you, not to brag, but my four-cheese mac is a true hit.

5:00 – Dinner done, Charlotte heads off to the shower, Nina turns on “Family Feud,” … and I head to the office again.  A friend (and former boss) of mine works for a third-party logistics company – they do warehousing, packaging, transportation and the like for companies who don’t have facilities of their own or need extra capacity – and I do some freelance letter-writing and the like for her.  She needed me to enter some numbers at a website for a government agency with which they’re submitting a bid.  This was the first chance I’d had to take a good look at what she sent me, and while the numbers were clear, where I was supposed to enter them wasn’t.  So I call her, somewhat embarrassed at my own density … and my timing is perfect, as she had just found out that a password was needed to get into the website, and the government agency hadn’t given it to her.  (Your tax dollars at work, folks!)  So she hopes to get the info tomorrow, and we’ll take another run at it then.

5:30 – Okay, now I get a little break!  So time to give Sean a hug.  Time to discuss random topics with Nina, like the opening of the new Minnesota Twins ballpark and Conan’s new show on TBS.  (She had the same reaction as I did.)  Time to catch up on brainless pop-culture reading on the ‘Net.  Time to muse about those glorious days of yesteryear when I had a life …

(I’m joking about the last part.  Partly.)

6:25 – Charlotte’s done with her homework, so it’s time to look it over and correct it.  Out of 73 math problems, she got fifteen or twenty wrong – and most of those were just darn hard problems for a fourth-grader.  (The rest, she either read + for – or vice versa, or her answers were too messy to read.  Penmanship is her Achilles heel, alas.)  I decided the problems were difficult enough that she’d need a little extra help, so we went through the mistakes one at a time.  It takes a while, but I think it’ll be worth it, both on an intellectual level and a “father-daughter bonding” level.

7:05 – Short break from the math homework while I lift Sean again, this time taking him from his wheelchair and momentarily wedging us both into the bottom bunk of the kids’ bunkbed so I can set him in his place between the pillows.  And hoping he doesn’t put an arm down to catch himself, which will usually cause me to land on top of him.  (And I wonder why I’m having back problems.)  From there, Nina will change his diaper and clothes and cover him with compassion and teddy bears.  She’s so much more nurturing than I am – sometimes I think it’s just pure bad fortune that sends her off to earn a paycheck (or in the case of her employer, one-third of one) and sticks Sean with his curmudgeonly dad.  But I have to assume God has a plan in this …

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7:08 – Back to the math homework, now two-thirds corrected.  By the way, in case you don’t believe those problems were tough, here’s one example:

Fill in the missing number:

(57 – 24.18) – 2.38 + (3.9 – _____) = 29.77


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