The Doing Of The Things….


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I’ve had a few people ask for updates, ask how things are going, ask how we’re dealing with everything.  My answer waffles between the socially expected and accepted “Fine!” to the brutally honest “Shitty!” … but I usually eek out a fairly indistinguishable “Mmmmmeh-bleh-pffffft” and then sort of laugh. It gets the point across that things aren’t all hunky dory, without being specific. Most people let it go at that point, realizing that they have not gotten the happy answer they were looking for and are relieved to back away.

I have learned in life that people don’t really want to know that your life is shitty. Few people are close enough to you to really WANT to know about the bad side of your life.  And if they hear that things aren’t going well, then they feel awkwardly bound to say something reassuring or do something helpful… but they rarely know what is the correct thing to say or do (nor do I), so they stumble through a messy exchange, fervently wishing they’d asked someone else how THEY were doing.

So in all of my human kindness, I try my best to spare them that.  Mostly because I’d like for people to continue to interact with me and I realize that if every time they talk to me I become a dervish of negative, whining energy, they will avoid me.  And I do need some peoples around.

But here, on my keyboad, in my world that is the blog, I can say whatever I want, I can say it all.  And if it makes people uncomfortable, they can just pretend they never read it.  And none of us will be the wiser.

So here goes.

After spending 6 weeks (4 weekday mornings per week) at the dialysis center being trained, we have spent the last 7 weeks administering dialysis to Michael in our home.  We have relegated a sizeable part of the gameroom to this task.  We have a giant recliner that we cover with a king sized waterproof mattress pad to protect from blood spatters.  We bought a hospital utensil tray for the supplies to be used during dialysis.  That stands between the recliner and the giant dialysis machine that beeps and whirs at random times, and radiates heat like a mofo.  On the other side of the recliner is a book case we’ve had for years, but it now houses tape and gauze and syringes and masks and tweezers and tourniquets and a blood pressure cuff and a thermometer, and alcohol wipes and various sterility-ensuring items etc etc.  Now of course, me being me, the open shelves have decorative baskets set on them to hold the supplies.  Because heaven forbid we have plain brown boxes of ugly medical supplies showing!

Oh, and the game room closet!  The one that used to be thought of as the Game Closet, with a future earmark to being converted to a dry bar upstairs when we converted the upper half of the game room into a sports-themed fun adult area.   It’s now half full of stacked boxes of the big supplies like cartridges and dialysate bags and  tubes and needles and saline sacks and… well… dialysis STUFF.

We use the supplies from both areas as needed, and we order supplies as we get low, from 2 different medical supply companies.  Each month  online forms come asking what we need, so we fill out the request forms, and a few days later more boxes show up on the front porch.  I cannot begin to tell you how many cardboard boxes we have opened, sorted, broken down, and sent to the recycle can in the garage.  So. Many. Boxes.

So the supplies are there, the area is set up, and we now have our routine mostly in place. Our “official” prescription given to us by the nephrologist for administering dialysis is every other day, 2 hours at a time.  Which would mean Monday, Wednesday, Friday one week then Sunday, Tuesday, Thursday, Saturday the next week, alternating ad infinitum. It sounds good and regular in theory, but when you look at the calendar of activities in your life they rarely line up with this sort of schedule. If you have a child who plays a sport (and we do) then practices are the same day each week.  If you have a child who wants to volunteer at an animal shelter on a particular day or two each week  (and we do) then you need to leave that particular day(s) open if you can.  So we looked at our calendar and decided that Monday and Wednesday were consistently busy evenings, while Tuesday, Thursday, and Friday were not.  And weekends always had some free time in them.  So we settled on a schedule of Tuesday and Thursday nights, and then anytime on Saturday and Sunday.  A  consistent 4 treatments a week. And we know that this treatment schedule is flexible so we can move the 4 days around if we need to; this is just the schedule that works best right now.

I mentioned up there 2 hours at a time.  That 2 hours is just the time Michael is actually hooked up to the machine, when his blood is being cleaned and dialyzed.  There is also a certain amount of pre work, or set up, time and some post work, or break down, time. First we have to decide what time are we going to start so that we can put some numbing cream on Michael’s arm to make the needle entry as pain free as possible (it’s still not pain free) and time it so that the numbing cream is most effective.  They estimate that it takes an hour to be at its optimum numbing potential.  I sure wish he could tell us if that’s true.  He winces just as often as he doesn’t, even at the supposed peak one hour time.

30-40 minutes later, the machine has to be loaded with a special cartridge full of tubes that have to be hooked up to a saline bag and to the dialysate liquid.  This takes a few minutes to load and 15 minutes to prime.  During the priming stage,  Michael has to be weighed, have his blood pressure taken (both sitting down and standing up), a rectal suppository inserted to ensure he has no big seizures during the process, and his temperature taken.  There is a flowsheet full of data that has to be filled out each time to record all of the vital signs we just took, as well as information regarding the machine’s lot numbers for the various parts.

Next we program the machine with the numbers we decide based on his weight for the day.  This part has been very difficult for us because it has truly been a guessing game.  There is a target weight, called a dry weight, that we are trying to hit.  Dry weight is the amount a person weighs when they have no excess fluid in their body.  For most dialysis patients it is simply a matter of knowing how much they typically weigh, calculating how much they drink minus how much they urinate (if any) and taking off that amount of liquid that is unaccounted for and presumed to be excess.  Our issue is that we have no idea how much Michael  should weigh.  Since his kidneys have not been functioning we know he’s had a build up of waste products but he also has been retaining fluid.  He still urinates but he’s not urinating out as much as he’s taking in in liquids.   Typical dialysis patients also can determine if they have any bloating, if their lungs feel full or heavy, if their blood pressure is elevated, and a couple of other key things.  Michael is so bone thin he really has no visible water retention, he can’t tell us how his lungs feel, and since he wears pullups and has accidents we can’t get an accurate measure of his urine output.

So we make our guesstimate.  We don’t want to pull too much fluid off because that will cause cramping and pain as we’d basically be dehydrating him.  We watch for signs of that throughout the treatment as the fluid is removed (we can see the number of liters decreasing on the machine readout) and we have saline at the ready if he looks like he’s in pain and we can push some back into his system.

We do know we have been successful in one key area, because his blood pressure is significantly lower than when we started.  Too much fluid in a body causes blood pressure to go up.  His numbers the first few weeks were in the 130’s/90’s range (even on 3 different blood pressure medications) and recently we’ve been consistently in the 100’s/70’s range and NOW have to be careful it’s not dipping too low.  We’ve come completely off of one (out of 3) blood pressure medications and are in the process of weaning him off of a second one.  That was a huge hurdle to overcome.

Okay!  Now that all of the prework is done and the machine has been programmed with his prescription for the day, we finally put Michael in the rocker-recliner and flip up the footrest so that the chair is just a recliner.  Rocker would be bad.

After we don our masks and gloves, the next task is to pick off the scabs that have formed over the access (entry) holes so that Mike can insert the needles without shoving old dead scabby skin into his system. Sometimes this takes 30 seconds and sometimes it takes 5 minutes.  Crazy disparity there for scab picking.

Then comes the actual beginning of the dialysis process. I kneel on one side of the chair and position myself so that Michael can’t kick his legs, can’t reach over with his right arm, and can’t move his left arm so that he’s as immobile as possible when Mike inserts the needles.  He cleans off the site with 2 antiseptic cleaners then inserts the needles, one at a time, while I hold onto Michael and watch his face for signs of distress.  Obviously this is my least favorite part.  His reaction ranges from a body jerk (the worst) to his eyebrows furrowing in pained confusion to a glance over at his arm to see what’s up to no reaction at all.  Once he was “singing” to himself (he makes random humming sounds to entertain himself and I call it singing) as we started and he didn’t even pause in his song as the needles went in. I keep hoping for more of those days.

Then Mike primes the lines (lets the blood flow to the end of the tube line) and runs the lines to the saline bag hanging on the hook. Twice a month we have to draw labs to be sent for analysis.  Mike inserts the lab tubes into the arterial line and pulls out whatever they are requiring that week.  There’s a whole set of steps for the vials of blood including a centrifuge for spinning it, then refrigerating it, then packaging it on ice to be picked up by a FedEx dude.

And now, FINALLY, we’re ready to actually start the dialysis.  We check to see that all of the color coded connections are set right.  4 sets should be open, one set should be closed. Then we both take a deep breath, say “Ready?” and push the buttons to start the machine.

If everything was done correctly, the machine makes a start-up whirring sound and the blood begins to flow out of his arterial line through the tubing that runs through the cartridge in the machine where it flows through a large tube that somehow allows dialysate to clean the blood without actually mixing into his blood, then back out of the cartridge and into his venous line.   Over and over and over the blood flows out and then back in.

We record the start time, do a blood pressure reading and watch the numbers on the machine that show the various pressures from the needles.  If the needles are positioned incorrectly, an alarm will sound; if there’s a kink in a line, an alarm will sound; if there’s a leak in any of the tubing or equipment, an alarm will sound; if Michael jerks his arm or bends his arm, an alarm will sound; if his blood isn’t flowing correctly, an alarm will sound; if we haven’t sacrificed the correct chicken, an alarm will sound.

And it’s not like the alarms sound and you get a read out with words like “Arterial needle out of position.”  No, you get a number.  A Yellow 10 or a Red 24 or a Red 38 or whatever.  I think there are 60 different alarm codes.  And you have to flip open the book if it’s not a common alarm to find out what it is, and what to do to rectify it.  A few we know already because they happen fairly frequently and we quickly fix them.  A few we’ve had that were new to us, but we were able to overcome.  And then there were a few we’ve had that we couldn’t fix even after a call to the Help Center and we had to terminate the session.  THAT is the WORST feeling EVER.  To be less than an hour into the session and have to terminate.  When you terminate a session because the alarm sounded and the machine refuses to start again, you lose all of the blood that is in the tubing and in the machine. Twice in one weekend we had to terminate and he lost 277 cc’s (about a half a pint) of blood each day. For a kid who has struggled with anemia and red blood counts, he doesn’t need to be spending time making new blood.

Ever since that weekend (when we were told to come into the Center on Monday morning to ensure he’d get a good session with a nurse watching over us because it had been too long between sessions and his blood needed to be cleaned… it felt like being called to the Principal’s Office) Fear Of Alarms is the number one stressor in my life.  I sit there during the 2 hours, holding Michael’s arm, recording data, watching TV or surfing the internet, completely tense waiting for the dreaded dinging signalling something is wrong.  The past few weeks we haven’t had any alarms, but that doesn’t make me feel any more reassured or any calmer.  I just keep waiting for the Bad News Ding.

But meanwhile, when things aren’t dinging, Mike and I sit one on each side of him, holding his arms for the 2 hours.  Every 30 minutes we have to do a blood pressure check, and write down some other numbers the machine is showing, and verify we’ve checked his needle sites to show he’s not bleeding out onto the floor (short sleeves only and don’t put a blanket over that arm) and administered saline if needed.  And in between that we watch TV and talk.  With no alarms it’s not an awful way to spend 2 hours.

Of course that’s assuming he’s cooperative.  Sometimes he dozes off, sometimes he sits calmly, sometimes he even looks like he’s enjoying watching TV although we know he doesn’t ever actively seek out that activity.  But most times there comes a point when he’s active, even agitated, and wants out of the chair.  He struggles to lean forward and get up. We hold him back in the chair and calmly tell him he has to stay seated.  We are rewarded with a dirty sideways look.

Lately he’s taken to sloooowly, imperceptibly, sliding down in the chair, and we don’t even realize he’s gotten so low until we are alerted by an alarm sounding that there’s a kink in a line because his elbow is so far bent, or we feel the chair tilting forward due to his legs almost reaching the ground.  Then we have to bend his legs up on the footrest, get a grip under his armpits and hoist him while asking him to Sit Up.  He obliges by pushing with his feet against the footrest and sliding upwards.  We have had to do this anywhere from 1 to 12 times in various sessions.

When the session ends, we mask up again (Riley even knows to mask up at certain times if she’s in the room) and start the process of flushing the lines with saline to send the residual  blood back  into his body.  We do another blood pressure reading, and then Mike disconnects the lines and pulls out the needles, one at a time.  He has to hold a piece of gauze over the access site for many minutes because Michael’s fistula (the newly constructed vein/artery connection) is very strong and pumps the blood quite rapidly and it takes awhile to get the flow to stop.  Early on, when he was severely anemic and his blood was thinner, it took 14-19 minutes to stop the arterial access.  It would spew blood if Mike took the pressure off too soon.  Since he’s been given sufficient amounts of iron and epogen so that his body can make and store iron again (kidneys produce Erythropoietin which is a hormone that helps the body make and store red blood cells– kidneys do a TON of things!) his blood is thicker and it clots faster after the needles come out. It also was too thick and caused the alarms that one weekend so now he has to have a blood thinner administered just before we start the sessions.  See?  Fix one thing, cause another problem.

Then we cover the site with gauze and tape, get 2 more blood pressure readings (one sitting, one standing), take his temperature, and weigh him to see how we did with fluid removal.  And then, a mere 3 to 3-1/2 hours after we have started the process, we’re done. Til the next time.

At this point we either take Michael downstairs to eat a meal (I usually have something prepared to reheat or do the final preparations on a new meal while Mike does the final weighing and temperature reading upstairs) or we go out to eat.  Either place, the boy will EAT.  He eats so much food right after he’s had a dialysis session it’s almost gross.  And not just his usual stand-by favorite foods, but pretty much ANY food: pastas, stews, salads, sandwiches, casseroles, chili, meats of all types, side dishes, on and on.  Sadly this has been the only time he’s significantly hungry and even as early as the next morning his appetite has dropped off again. This is a question we’re working on finding the answer to, because he really needs to be eating more consistently.

Then we go upstairs so Mike can unload the cartridge from the machine and throw it away along with the drained saline bags, the used tape and gauze and syringes, tossing all of the sharp needle ends into the “sharps container” for disposal.  After he’s done with that I wipe the machine down with a 10:1 water/bleach solution and finish the flow sheet report, which Mike then attaches in an email to the dialysis center.

Twice  a week the machine has to be loaded with dialysate which is the cleaning agent that mixes in the machine to clean out his blood before returning it to his body.  That’s done on a non dialysis day and isn’t time consuming, it just needs to be remembered to be done. And once a week the drain line is flushed with bleach to avoid it becoming clogged. And once a month a water sample is pulled to be sent to a lab in Florida for analysis.

It’s a process.  A multi step process that is becoming more routine as we do it, with a reminder to never become too complacent as we do it.  There are so many opportunities for carelessness that could lead to infection.  Hygiene, good sanitation, etc, are all so very important.

So.  That’s WHAT we’re doing.  The bigger question probably is HOW are we doing as we’re doing it.  It’s a tough question.  We’ve run the gamut of emotions as we’ve dealt with it all. Fear has been a huge factor.  Fear when we heard he needed this process to live.  Fear we wouldn’t be able to master it.  Fear that, even though we’ve technically mastered it, we can still screw it up.

And we’ve traveled through a thought process that started with a frightened “can we get this?” epiphanied to a triumphant “okay we got this” and stumbled onto a “okay we’re always going to have to be getting this” …and that last thought is where we are feeling stuck lately. It’s overwhelming to realize This Will Never End and This Is What We’ll Do For The Rest Of His Life.

This is not something he will get through and recover from.  Dialysis will not make him better. What we’re doing is hooking him up to a machine that mimics his kidneys to perform one of the functions of his kidneys, which is removing all of the waste from his blood. And when we take him off the machine, his body immediately begins to deteriorate as the waste immediately begins to build up.   We help make him feel better temporarily until the next session.  A cycle of up and down.  Dialysis will not heal him.  It will not cure him.  It will never end.

I’ve had family members receive treatment for horrible diseases, including cancer.  They receive their prescription from the doctor, and then they endure chemo and radiation and their bodies are poisoned in order to kill the bad cells that have infiltrated their organs. And either the disease wins or the treatment wins.  But when the treatment wins, it really and truly wins. They can be cured.  They can be whole again.

This isn’t that.  There is no winning.  There is no “well after 20 or 50 or 500 treatments your kidneys will work again; this treatment has fixed you.”  No,  kidneys that are broken like Michael’s are broken are broken forever.  And without this treatment, he would just get sicker and sicker.  His blood would  become more and more polluted with no way to remove the waste building up, and eventually his heart would give out.  So by hooking him up 4 times  a week, we’re basically saving his life.

And while that sounds huge and noble, I can’t find any heroism in that.  I find mostly overwhelming panic.  Since we have to do this forever, we have to stay healthy to be here to do this forever.  We can’t have an accident and disappear.  We have to be here. Forever.

So there is a soundtrack of “Don’t” playing in my mind all the time.  Don’t get in a car wreck, Don’t break your wrist, Don’t let Mike’s plane go down, Don’t fall down the stairs, Don’t eat that crap food, don’t , don’t, don’t…. Don’t disrupt the routine we have going because we have to keep saving his life, don’t, don’t, don’t….

A body could go crazy with that drumbeat sounding….

And yet, the world keeps turning.  So I have to turn down the volume on that cacaphony of catastrophe and pay attention to  the rest of the things in our life.  The other kids, holidays and birthdays, sporting events, school activities, the three stinky dogs, flippin’ grocery shopping. I continue to listen to the stories of the little one, to appreciate a pretty day, to find the humor where I can, to try to find a balance in the family. And try not to let the bass notes of lunacy color all of our interactions.

We’ve adamantly refused to not let this Thing We Do be an excuse to not do the other things we need to do. Which is why we still helped her sell 200 boxes of Girl Scout cookies, why meals get made and laundry gets folded, why Mike still makes sure to take her to volunteer at the animal shelter, why we still plant flowers in the yard, why spelling words and volleyball practice and church lessons still happen, even on days when I struggle to keep the darkness from taking over, and work hard to turn a deaf ear to the defeatist voice whispering sour nothings into my ear.  That our dealing with the big parts of Life and Death don’t let us forget that the little parts are important too… on some days, maybe even more important.

But in piecing all of the little parts together, we know that each plan will revolve around “how will that work with Michael’s dialysis schedule.” We can make invitations to activities work; we just sometimes  have to reassess our weekly schedule.  And we’ve realized that all of our outings and vacations will be curtailed more than we’re used to.

Our Old Normal was never really normal.  And looking at what we’re doing now, I  realize our New Normal is ridiculously not.  And never will be.

But we can’t change the hand we’ve been dealt. We just play on.

2016-02-25 18.12.39


Posted in Home Life | 10 Comments

Move Over, Romance….


It was a weird WEIRD Valentine’s Day for me.  We’re not really over the top Valentine’s people.  I don’t expect flowers, I don’t like the boxes of chocolate that are heart shaped (I like those gold rectangle boxes… yeah, YOUknowwhatI’mtalkinabout) and we rarely have had a sitter so we could go out to dinner alone to gaze into each other’s eyes.  It’s almost impossible to eat soup like that, anyway.


So Valentine’s Day has become more of a family day.  Small gift bags, home made cards, a sloppily decorated but heartfelt dessert, and dinner out at a low key restaurant with Mike and whichever kids are lying around our house that day.
Showing the love, losing the romance.  It works for us.
We’ve been married for over 26 years and I’m pretty sure he knows I love him.  I’m pretty sure he loves me.  So I’m okay not going overboard on the event.  I think if I went all out each year it would be really stressful to come up with romance on demand.  And expensive.
Because it comes right on the heels of Christmas.  The activities, gift buying, decorating, food prep, organizing, and gift giving involved every Christmas is equal parts fun and stressful.  Oh who am I kidding; it’s 90% stressful.  So I don’t want to be loaded down with potential guilt and disappointment by not hitting the mark on Valentine’s Day so soon after not hitting the mark at Christmas. And I’m pretty sure Mike is more than slightly relieved I feel this way as he’s not one to love going on gift hunts.
But then this Valentine’s Day rolled around and it fell smack in the “Dialysis Has Taken Over Our Life” mindset we’ve been in since January.  February 14th proper was actually the first day we were on our own to administer the dialysis to Michael in our house. Somehow I’d managed to get a few cute things together to put in Riley’s and Michael’s gift bags, and I’d bought cupcake fixin’s for the dessert.  So the basics were all covered.  Yet here I was, from the moment I woke up, thinking only of  the 287 steps involved with doing the big D. And trying not to think of the 288 things that could go wrong.
About 12:30 we got into Dialysis Mode.  There is machine prep, and Michael prep, and paperwork prep, and equipment prep, and when you do it right the things overlap so that you can get one thing done and then start another while the first thing is finishing on its own, etc etc.  And of course Riley was getting to see all of this for the first time because all of the other sessions had been done while she was at school.  So there was a bit of conversation about when she could talk and when did she have to wear a mask, and could she go to the bathroom during the session or would that mess up the machine because she knew the plumber had hooked things up in that bathroom.  We got things all squared away and started the treatment.
And it all went fine. No alarms, no malfunctions, no big seizures, no major irritability.  But even when it’s fine, it’s still just a lot awful.  The potential for excessive bleeding is of course the scariest part.  His little arm with his surgically implanted fistula pumps like a geyser so a good stick is imperative.  And Mike has gotten some really good sticks lately. But even the good sticks mean nothing if Michael flinches or draws back his arm.  So I’ve had to figure out how to position myself to hold his left side, his legs and his right hand all at the same time.
Removing the needles requires the same positioning.  Not that the needles bother him coming out, but he has to be still so Mike can apply pressure to the right spot or else he’ll lose a lot of blood.  His arterial access tends to bleed a lot on needle removal, and takes at least 8 or 9 minutes to stop flowing.  The venous hole takes 4-5 minutes.  That is a long time to sit in one position holding things juuuuust so.
And then of course during the 2 hour process that he is dialyzing (the machine cleaning his blood) we have to sit, one on each side of him, holding his hands and arms so he doesn’t reach across with his left hand to pull off his tape (apparently it’s really itchy!) or bend his right arm and mess up the needle placement.  At home we have the luxury of watching TV, but Michael isn’t interested in the TV so he sits there bored.  If we’re lucky he falls asleep.  But even then, when there’s 20-30 minutes left he tends to get really antsy and fidgety and is ready to GO!  Seriously long LONG 20 minutes at the end there.
But like I said the session went fine.   Mike did a great job with the needles, just like he’s done a great job stepping up for this whole process.  The vacation days he sacrificed to attend the training, the practical but loving way he’s approached the things that need to be done, the care he’s taken to make sure all of the parts are done correctly.  And then watching him suck it up and painstakingly do the most painful parts of the process.  When we realized only one of us would have to learn how to do the needle insertions, he had no problem volunteering to do it.  I felt incredibly guilty that I was so relieved that he was willing to do that.  If I HAD to, I know I would have, but I also know that the early needle sticks were very painful for Michael  and I cried watching him grimace in pain.  I can’t imagine that being blinded by tears would be beneficial to the delicate work involved if I was the one cannulating his arm.
So that was a big chunk of our Valentine’s Day.  It felt even more unromantic than our usual unromantic Valentine’s Days.  But the more I thought about the day, I realized this holiday was okay without the romance.  Because it was definitely about the love.  The things I was witnessing on this particular Valentine’s Day were probably the biggest displays of love a person can encounter. Self sacrifice, giving, ministering, caring… taking steps to ensure the greatest quality and quantity of life for another human being.  Well, there he was doing it all.
A big shiny ball of love, married to me.
Love takes many forms, shows its face in many ways.  I’m glad I looked the right way, to see it the right way.  Happy Valentine’s Day.
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A Fortnight of Ups and Downs

So here we are, done with our first 2 weeks of dialysis for Michael.  The last blog I wrote was about how the first session went.  Relatively well, overall, as far as him being hooked up and dialyzed.  We watched the whole process and when we finished the first day we were completely overwhelmed by the sheer volume of things involved.  At the same time, we were ready to tackle all of the steps because we’d seen that after only his first short session he was happier and hungrier than he had been in months.  This wasn’t so awful, we thought, we can do this, he can do this.

And then we went back for the 2nd session.

The session where he proceeded to have three, count ’em THREE, grand mal seizures during the dialysis process.  When he was hooked up to a machine by 2 large beveled needles that were straining  as his arm was tensing and contracting during the seizures. When said machine was pulling the blood out of his body at a rate that I read somewhere was about 1-1/2 cups per minute.  The seizures probably only lasted about 30 seconds each, but each one of those seconds was an eternity of fear.

Usually when we’re in the “he’s having a seizure” mindset, our first thought is to get him to a place where he won’t bang his head, usually a carpeted area, and then we just wait while he lies on the floor and has the seizure.  We don’t try to stop the seizure or hold his body still or (some people still think this is a thing to do, but it’s not, so don’t do it) keep him from swallowing his tongue.  We just watch it happen. And keep an eye on a clock that it doesn’t go on too long.

In this instance all we could think was “don’t let those needles come out or go any further in” and the three of us held his shoulders, his legs, and both of his arms–most especially the cannulated arm– for the duration of the seizure.  Three times we did this. Three times I panicked and watched his arm twist and stretch, while listening to the machine cry out its own alarmed panic. Three times we hoped that this was the last one.

The next day was our “off day” so we didn’t have a dialysis session and he didn’t have a single seizure.  So back we came on Thursday to try again, hoping the seizure breakthrough was a fluke.  But, no.  This time he had two grand mal seizures during the dialysis session and two after.  The last one being the biggest seizure I’d seen him have in years.

So there we were, upset and worried and sad and frustrated and all of the other things associated with profound disappointment. Because we knew there was no way we could spend each dialysis session dealing with that. Not only was it dangerous for him to be subjected to so many seizures, but the risk of needle infiltration (yes that means the needle piercing through the vein completely) was extremely high.  So something had to be done.

The problem was, we weren’t sure what was causing it.  Our first thought was that his meds were being removed from his blood and left in the filter along with the toxic things that were supposed to be left in there.  But Mike had made a call to the neurologist before we ever started dialysis to ask that specific question:  Did we need to adjust anything about his medication or the schedule to ensure he’d still be protected from seizures?   The doctor had told us, No, everything was good, the medications wouldn’t dialyze out, just keep doing what you’re doing.

But the fact that he was only having seizures during and immediately after dialysis prompted us, as well as the nephrologist, to wonder  “Hmmmm, are we SURE this regimen is okay? Are we SURE the meds aren’t dialyzing out of his system?  Does the neurologist know what he’s talking about?” Luckily the nephrologist agreed to pow-wow with the neurologist on Thursday afternoon.  It’s always better for doctors to talk to doctors if they’re willing.  And so we waited for them to let us know before Friday what the plan was.

Except they didn’t let us know anything.  So we showed up on Friday, dialysis day 4, and were told by the nurse that we needed to call the neurologist.  Huh?  What?  At 8 in the morning?  It had been our experience that doctors’ offices don’t get up with the chickens. Especially not specialists’ offices.  So Mike called and was put on hold and then sent to another person and then to another person and a scant 22 minutes later he got the neurologist on the phone.  Pretty sure he was still home in his pj’s, but whatever.

The neurologist told Mike he was certain the seizure meds Michael was on were not dialyzing out of his system.  That wasn’t how they metabolized, plus he had other patients on those drugs who were on dialysis who were not experiencing breakthrough seizures. He really felt that Michael’s body was reacting to becoming clean and healthy in such a way as to almost be in shock.  And with the way he was wired, it was throwing him into seizures. So to override that seizure activity  we needed to administer a new med just before dialysis that was very strong, very quick acting, and would work just for the duration of the dialysis sessions.

Okay, we were up for that.  Give us the med and let’s get started.

Not so easy.  Apparently this was a controlled substance and therefore couldn’t be called in to a pharmacy.  It required a hard copy prescription, so come on over to Keller and get it. After that, go home because there’s no dialysis today.  Ugh.

And probably the worst part of all of that?  We actually had a bag of the stuff in our pantry. Two years ago when Michael was in the hospital with kidney problems, he went into a bout of uncontrollable seizures that bounced him from the general ward to the ICU in order to get him stabilized.  We were given that magic bag and told to administer this med if that ever happened again.   Luckily his seizures have been so well controlled these past two years that we’d never had to use it.  But the fact that we had the med and could have given it to him that morning if only a doctor had called to tell us the new plan of action was more than a little frustrating.

So home we went, no dialysis for Michael and a half day off of work wasted for Mike.  We spent the weekend letting him eat and drink as much as he wanted because he was significantly hungrier now that he was sporting some new, slightly cleaner blood (we’re starting slowly so even as clean as it is, it’s not as clean as it will be), wiping his runny nose because he had apparently caught the cold that I’d had the week before (sorry ’bout that, kid) and trying not to let our minds wander to the “What if” side of worrying.  But seriously what if this didn’t work?  What if he had an adverse reaction to the new med? What if we couldn’t continue dialysis?  What if… well, it’s a good thing we didn’t think about any of that.

Monday morning Mike administered the new anti convulsant.  As luck would have it, it is a rectal suppository.  Because our lives just aren’t fun enough.  By 7:00 in the morning he was prepped with both his usual arm-numbing cream and the new anti-seizure med, and ready for our 8:00 start time.

For the duration of that session, I was watching him for signs of… everything.  Anything. Whenever we give Michael a drug for the first time, we have to watch for adverse reactions.  For weird side effects.  For efficacy.  At first there was nothing much going on. He was calm, even a little sleepy but not to the point he wasn’t rousable.  No rashes, no fevers, no vomiting, no jitters. But about an hour into the session he had a case of the uncontrollable giggles.  Serious, deep down, can’t catch his breath, hiccup-causing, eye watering, belly laughs.  Funniest thing I’ve ever seen him do.

It reminded me of a few episodes I’ve had in my life where something struck me as funny and made me laugh and laugh and then, just when I thought I was done I’d think about that thing that made me laugh and even if it wasn’t really THAT funny it sent me off into deep. eye watering fits of laughter again.  Weeping laughter.  Punch drunk laughing.

So it was funny, but it was making him a little too animated, so we kind of needed it to stop after a bit.  We tried talking him down, but every time we looked at him, he’d start in laughing again.  We had to avoid all eye contact with him for about 15 minutes until he finally got through it and dozed off.  This happened 2 or 3 times throughout the session.

So that was bizarre.  But we decided that if that is seriously the only side effect we’ll see from that med, then we are good to go! Because he did not have one single seizure during that dialysis session or the next three.  So this definitely took care of the “seizure while dialyzing” issue.

Unfortunately, we are noticing that since he is feeling better and has more energy, he does want to get up and move around. He would rather not sit in this boring old chair with his arm held just like this, for over 3 hours at a time. Which I had mentioned in the last blog would be the ironic side of this– if we fix him to feel better then he’s going to  feel well enough to fight the process that is making him feel better.

The biggest problem this causes is that one of us has to constantly be sitting beside him, holding his cannulated arm and keeping an eye on the other hand to make sure he doesn’t reach over to pick at anything.  Which means only one of us at a time can be trained on anything meaningful.  And that means we’ll be slower to finish all of the training than we’d hoped.  But we’ll get there. Slowly but surely. The tortoise, not the hare.

And speaking of training, Mike has agreed to be the guy working the sharp needles to create a button hole access in Michael’s arm. This means he’ll insert a 15-gauge needle into the same spot in his arm each day for about 8 days creating a thicker, almost tunnel like area.  After the button hole is created, then a blunt needle can be used to cannulate his arm, and the sharp needles won’t be needed anymore (except in some sort of emergency, but we’re not going to think about that).  Since the sharp needles will be obsolete in two weeks, there was no need for both of us to learn how to stick Michael with the big sharp needles.

Mike had successfully removed the 2 needles at the end of the previous 2 dialysis sessions, and he had practiced inserting the needles a few times on the fake arm with great results.  So today when the nurse asked if he was ready to insert one of the needles into Michael for the actual dialysis, he said “SURE!” and inside I thought “Oh NO!  My poor little boy!”

I’d apologize to Mike, except I had the same internal reaction when the dialysis nurse, who’s been doing this for 20 years, said SHE was ready to stick Michael the first day.

Mike ended up doing so well with the arterial needle insertion that she asked if he wanted to do the venous needle insertion.  And he said, “SURE!” and I thought… well, you know….

Michael seemed to wince a bit more, but bled less, with today’s insertions.  And actually we’re thinking that since we got a later start this morning the numbing cream may have worn off and that was probably more to blame than them being bad sticks.  The dialysis nurse praised his success, calling him Super Dad.  But we all knew that already, didn’t we?

We’ll continue next week with the same plan of action, and with hopefully the same results.  Learning this process with all of the blood and tape and gauze and saline and gloves and masks and cartridges and buttons and beepings and paperwork and blood and needles and tubes and tubes and tubes and blood.  Seeing that it will all be worth it because we can see how it is already making Michael feel better… happier and healthier and hungrier.  

(Michael eating his body weight in Mexican food at Anamia’s after dialysis session #6)

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Dialysis, Round One…



Michael had his first dialysis treatment today.  I actually think of it as “we had our first dialysis treatment today” because while it was Michael’s arm being poked, and his poisoned blood pumping out of a hole in his arm through the tubes and filters and cartridges and dialysate (see we’re learning!) and returning clean and fresh back into his body through another hole in his arm, Mike and I were partnered right with him, doing all of the things he couldn’t do for himself.

It was our eyes watching to see that all things were handled correctly.  Our hands holding his hands in place to keep them from reaching to tear out a tube, or scratch the itchy tape.  Our fingers recording the data on the form that must be filled out every 30 minutes–blood pressure, heart rate, machine readouts, venous this, arterial that (okay we didn’t learn everything!), patient condition.  Our pulses racing when the needles went in and he flinched, and again when they came out and it took over 7 minutes for the bleeding to stop because DAMN that fistula WORKS, fiercely pulsating the blood out of his system. Our hearts on the table with him.

And for over 3 hours we were in a very small room, learning about a system and process that is about to change all of our lives.  We watched the dialysis nurse follow the many many steps involved in administering the treatment and realized this machine is coming to our house in about a month, and her capable nimble fingers wouldn’t be coming to operate it.  It will be Mike and I tearing tape and clamping clamps and connecting tubes and attaching solutions and uncorking drips and hanging packets and inserting needles and monitoring output and disconnecting tubes.  There were so many tubes!  And she showed me in the storeroom how many boxes of stuff will be delivered to our house for a month’s worth of treatment.  There were so many boxes!

And the needles.

I haven’t gotten my little head around the needle part yet. I thought I was okay with the needles because needles don’t really bother me.  I’ve watched when they’ve given shots to all my kids and I stare right at the site when they give me a shot or draw my blood.  As for Michael, we’ve seen them draw blood from this boy countless times, and both Mike and I have given Michael shots at various times (me when he was much younger administering an anti seizure steroid shot; Mike for the past few months with some iron injections) but today things felt much much different. Mostly cuz these were freakin big needles. And like I said, that fistula was pumping like a champ.  The nurse actually called another nurse in to take a look at it because she’d never seen one pumping so well, and so visibly. I guess when your BMI is as low as his is, there’s not one extra bit of fatty tissue to hide that thing.

Obviously part of our training will be on needle insertion.  She said we’d practice that a lot.  On a fake arm, not on Michael.  Whew.

The other part of our training will be mastering the machine.  She was going over the general workings of it today.  Showing us the cartridge, the filters, the tubes (did I mention: so many tubes!) and how it all flows.  I am fighting a cold which has had me down for a couple of day which meant I was A) trying not to cough and B) trying not to fall asleep. Mike said he could tell I was glazing over during the dryest of the material.  I hope the nurse didn’t notice.  Hate to get a bad report card.

So how did Michael do?   Well, since he’s tired from the sluggish blood in his system he really just wanted to sleep, like he has been wanting to the past few months.  But there was that pesky needle going in (and yes, the blood spurted out–literally spurted out–on the initial stick), plus it was not the most comfortable chair, and the 3 of us were all talking! So he’d doze, then he’d wake up for a bit and try to stretch and get comfortable again. Those were the most alarming moments–because he doesn’t just stretch a little bit when he wakes up, he wants to streeeeeeetch like a 5’9″ cat–reaching his arms up and out and wide. And he couldn’t. Not without causing a scene straight from a horror movie.

So we had to be alert any time he moved and immediately reach to contain his arms and legs…just in case.  Once he woke up and had a staring spell that we could tell was a small seizure and I prayed SO hard that it wouldn’t roll over into a big seizure.  Not on the first day, please oh please.  Nope, he blinked and came out of it.  Whew.

Overall we think Michael really did remarkably well.  He didn’t get upset about any of the procedure.  He understood to stay seated.  He didn’t try to push the nurse away, although he ducked away from her cold ear thermometer, and he pulled off the face mask the first time it was put on. After that he left it alone when we told him he had to wear it.  Our fear is that as the dialysis makes him feel better, he’ll have more energy and be less likely to want to stay seated and compliant during the lengthy process. Ironic, right?

And our first big post-dialysis moment?  Lunch.  We stopped at Whataburger before Mike dropped us at home and headed in to work. Burgers for us, grilled cheese for Michael.  The last few weeks and months we’ve been lucky to get Michael to eat much of anything.  He’d pick up his food and drop it, maybe eating one bite after spitting out four.  We were told his food probably tasted bitter to him, as that was a side effect of uremic poisoning.

But today?  He was reaching for the fries before we got them out of the little paper fry bag.  He stuffed those in his mouth and then grabbed the grilled cheese. He ate his whole meal in about 3 minutes.  Then we realized in horror what we might have done and quickly ate our own food, watching his face for any signs of “this might not stay down very long.” But no, he was good, we were good.  Can I get a third WHEW?

And now we’re home and he’s in bed resting.  I didn’t bother taking him to his day stay since Riley has a play date after school and I don’t have to go pick her up.  I’ll keep monitoring him for any post-dialysis behavior, of which I’m told here is no such thing, haha.  Mostly I want to keep an eye on his arm to make sure he doesn’t start bleeding.

Oh, and I wanted to say we actually had a nice moment during the treatment.  I know, right? How can that be??  Well twice when he woke up, he looked at us and started to smile.  The first time was about 45 minutes into the main 2 hour dialysis filtration process.  He just opened his eyes, looked at Mike and I, and smiled a little bit.  Mike began to make a few of the faces that tend to make Michael smile and sure enough he started grinning even bigger.  The nurse was in the middle of her discussion on how to read the front panel of the machine, when she realized we weren’t paying her any attention so she looked at Michael and said, “OH!  He can smile!” and then she laughed, like she was happy to discover this.

I knew what she meant.  I don’t think she’s ever seen him look like anything other than a sleepy, stumbling, somber young man.  And how sad for her to think that’s how he always ever was.  Or is.

But we know better how he can be.  How there’s a happy boy in there who plays, likes to take walks, enjoys going out to eat, gets excited at sporting events, swims in the pool, and not only smiles but has full on belly laughs when somethings strikes him as funny.  We’re hoping dialysis helps that boy come back out to play again.


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And So We Begin….

When last we spoke about Michael, we said he was going to be needing dialysis some time in 2016. That his kidney function numbers had been trending from questionable to bad to worse, that his appetite was decreasing, and his need for sleep was increasing.

Based on how people with the type of kidney disease that Michael has usually present, the nephrologist told us back in October that we were definitely going to be ready for dialysis sometime in 2016.  He encouraged us to be proactive in getting a fistula put into his arm so that when the time came, he’d be all prepped and ready for the easiest way to administer the dialysis.  Waiting until he actually needed the dialysis could result in possible emergency measures, including horrible things like needles in his neck, and who would want to have that treatment if there were alternatives?  So during November and December we scheduled the 2 surgeries necessary to get that fistula in place and working. The surgeon who did the procedure said it was healing quickly, maturing wonderfully, exceeding all of his expectations.  We were so proud.

We spent a fair amount of time discussing the time frame.  Trying to figure out the what ifs and the hows as best we could, considering we have zero experience with any of this. We’re flying as blind as two parents can fly.  Plus, based on the time frame the nephrologist had led us to believe, the idea of “Some time in 2016” seemed fairly open ended.

Mike took Michael for the required chest X-ray and labwork over Christmas break, we knew school would start again for both kids in January, we’d have our home visit with the dialysis nurses sometime in January, get a final clearance from the surgeon at our appointment on January 14th, see the nephrologist on January 26th, get some more labs drawn and see how things were in February. When we talked about big summer vacations, we’d say “unless he’s already started dialysis by then” and then we’d consider smaller vacation options as a backup plan.  And our plans for next Christmas included the phrase “transporting his dialysis machine” if we were going to be anywhere longer than 48 hours.

Then right around Christmas, Michael started looking worse and worse.  What little he was eating became less and less.  The amount of time he spent sleeping grew longer and longer. And then he started vomiting.

We had been told that everything he was doing was indicative of decreased kidney function.  When kidneys don’t clean the blood and remove the toxic waste, sending it down and out of the body, it has nowhere to go except back and up. Keeping his blood polluted, his joints achy, his body sluggish, and his tummy nauseated. Basically his body was poisoning itself.  When he threw up hard 3 times in 10 days, we knew things had accelerated to the point that our old schedule, tenuous as it was, was probably not going to be the schedule we were going to use.

Sure enough a call to the nephrologist revealed his B.U.N. and Creatinine (both kidney function numbers) were extremely elevated.  He’d gone from “yes, he’ll need dialysis sometime in 2016” to “he’s ready to start dialysis” all in the space of a phone call.

So now the appointment with the surgeon will be this Thursday instead of next week, the home visit by the dialysis center nurses will be on Friday, and we’ll take him to the dialysis center on Monday to begin his dialysis sessions.  On MONDAY!  And we scrapped the appointments and labs with the nephrologist that we had planned for the end of the month.  Not necessary.

Meanwhile we’re getting him on some anti nausea/vomiting meds today to get him through the rest of this week, because all of us (especially Riley) jump like nervous cats whenever he so much as hiccups.  And heaven forbid he cough.  She screams every time.  I was almost positive she was going to leap out of the moving car when he threw up in it after church on Saturday.  The protective “just in case” blanket we always toss over him did a good job of containing the vomit, but she was convinced she was about to be splattered… and then of course there’s that smell.

Starting Monday we’ll spend many days for the next 4 weeks at the dialysis center. This will be for Michael’s dialysis as well as our intensive 4 week training course so that we’ll be able to administer the dialysis at home.  We’ll have to figure out how to get this to work with Mike’s work schedule as well as our home schedule.  But we’ll do it. We have no choice but to do it.  It will be a long month, but it’s just a month.  And if we can get Michael to feel better, to eat again, to gain some weight, to have the energy to play again, to get him back to his normal, it will be a month well spent.

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When Systems Fail

I can’t tell you how many times, in the recounting of Michael’s issues to people who have asked “what does he have?”, we have listed his seizure disorder first (he has seizures all the time… weekly, sometimes daily… yes, grand mal), his developmental delays second (he’s about 12-18 months old cognitively… he can’t speak at all…  he is still in pull-ups because he can’t use the toilet consistently), his hypertension third (it used to be well controlled, now we juggle meds a bit more) , and his kidney disease last (he has cysts on his kidneys, but they function fine). Because that’s how we have had to deal with him through the years. He has to be watched 24/7 because he might have a seizure, he might wander off, he will crap in his pants, and he needs his meds.  But his kidneys? Yeah, they have cysts.  Yeah, we do a yearly sonogram.  Yeah, we keep an eye on them.  No biggie.

Until suddenly they were a biggie.

2 years ago he started urinating blood… and his life, and ours, hasn’t been the same since.   He was hospitalized twice for that.  Trying to figure out what caused the bleeding.  Then how to stop it. We changed a seizure medication and that seemed to take care of things, because the bleeding and the pain ended. So either that was the cause, or it was one of those pesky cysts that ruptured and once it bled out, that was it. We may never know what caused it, we were just glad it was over. It was a scary time. And whether that triggered the next two years’ chain of events, or whether they would have occurred anyway, we’ll probably never know either.

All we know is that we’ve been riding this failing kidney train for a long time and it feels like it’s taking us straight to hell.

Because that’s what we’re dealing with now: Failing Kidneys.  Not just polycystic kidneys resulting in renal cystic disease. Not just the hypertension caused by those oversized, cyst infested kidneys. This is full blown, these numbers are not getting better, these organs are not functioning like they should, we need to be proactive and do something, Failing Kidneys.

So like all good special needs parents, we were completely prepared for this moment. We’ve known in the back of our minds since the day he was diagnosed at 6 months of age, that this was a possibility.  Nay, a probability.  So we had done our research and our homework and were ready to jump into action as soon as the doctor made this proclamation.

Yeah, not so much.

Truth be told, I started to cry.  Quietly, unobtrusively, because I like this doctor and I was trying not to embarrass either one of us.  But I cried.  I was overwhelmed, I felt helpless, I was worried it was the end for him and I can’t do The End yet.

So we began to do all of the things necessary at this point.  We were plunged into The World of Everything Kidney.  Everything Nephro.  We talked about dialysis options.  And kidney transplant options.  And how they overlap.  We read the stack of paperwork they sent to us, as well as random articles online.  We filled out an application for him for the Baylor Kidney Transplant process. Over the next 2 months, Mike took him for labwork, for sonograms, for an echocardiagram, for height and weight checks, for a urinalysis.  We took him to meet with a surgeon on the transplant team, a dietitian, another doctor, and a social worker.  We sat through a 3 hour orientation meeting. We waited while it went to committee.

And we were declined.

He was denied.


Turned down as a candidate.

We had been told this might happen. Persons with disabilities have long been denied medical procedures and services that non-disabled people receive.  He has a lot of underlying issues that not all doctors are willing to deal with.  These issues make him not a “typical” transplant patient.  No shit, world of doctors, he’s not a typical anything.  But he’s a person.  He’s a human.  And somewhere in the words of the Hippocratic Oath, he has to mean something.

Or maybe not.

(And my soul died a little.)

I remember texting some people who knew where we were in the process and them asking, not understanding: “They won’t let him get on the transplant list? Even if you have a live donor?”

And me explaining that even if I had a perfectly matched, beautifully functioning, 100% grade A healthy glistening kidney, it wouldn’t matter. The committee wasn’t willing to do the TRANSPLANT SURGERY ITSELF.  On Michael.  And then I referred to such committee members as a bad word that started with F and ended with uckers.

Even though we had been told this might happen, it didn’t make it easier to read the letter when it came.  It was still a gut punch.  And (surprise) I cried some more.

So now we’ll have to begin the process again with another hospital network and see if they will be willing to do the transplant procedure.  On Michael.

Meanwhile we have to get him prepared for in-home dialysis.  Because his numbers still aren’t getting better which means his kidneys are getting worse. And as they get worse, and function less efficiently, his body will begin to poison itself.  Dialysis will clean his blood and do what his kidneys won’t be able to.

Mike took him for a vein mapping last week to get an idea as to how sturdy his veins are, and how they are laid out. We met with the surgeon yesterday who has agreed to do the Dialysis Fistula surgery on his left arm.  This surgery will basically prep a vein/artery to allow us easier access when we have to hook him up and insert the needles for dialysis. Because of how Michael’s veins are (and the doctor said everybody’s veins are different, like fingerprints) the vein they will be using has to be relocated away from a nest of nerves that it apparently sits on.  So the surgery will be twofold.

But after everything has healed, in approximately 4-5 months, he will be ready for dialysis whenever the nephrologist decides his kidneys have done all they can on their own.  And we’ll be doing this at home, because the logistics of taking him 3-4 times a week to a dialysis center are staggering.  He won’t know the people, he won’t understand why he’s there, or what they are doing, or that he has to sit still for hours at a time in some strange place. But for Mike and me?  In our own home? The odds are better that he’ll tolerate it.

And if he doesn’t…?  Well, we won’t even let our minds go there.  Not enough kleenex in the world.


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This month there is a big focus on Tuberous Sclerosis Complex (TSC) with the culmination being Global Awareness Day today, May 15th, and a campaign to hear all of the stories at #IAMTSC.

I don’t know that I’ve ever consciously thought of the disease as a Global Issue, although obviously it is as the numbers reveal that it affects people everywhere.  I’ve thought of it in the National sense because we’ve lived in different states and have had different experiences with doctors and clinics and support groups and schools, all of which have had varying experiences with the condition.  I receive publications and information from the National Tuberous Sclerosis Alliance.  And I’ve thought of it locally when we’ve taken part in the Step Forward To Cure TSC which is a fundraiser in the form of a Walk in Frisco (as well as many other cities nationwide) each year. We’ve done the walk a few times and we send in a check as a donation every year. And of course I’ve thought of it intimately every day in our house because, for almost 25 years, it has pretty much defined us as a family.

I don’t like to think of it that way.  Like every family, we try to normalize ourselves and most days I don’t dwell on all the things we do that have to do with Michael.  But during times like this, when my FB page is peppered with reminders that the disease is not only there, but affecting thousands of children, people, and families in all sorts of ways, it makes me stop and think that what we’re “normalizing” really isn’t normal.

But it is our normal.

It’s our normal for Mike to wake up at 5:00 each morning and take this 25 year old man-child to the bathroom, hoping to have caught him before he has wet the bed.  And if he wasn’t lucky enough to catch him, then to strip the bed and remake it before changing Michael’s clothes and putting him back into bed to sleep until I get him up to go with me to take Riley to school.  It’s our normal for me to often be greeted by that pile of full-size sodden bedding in the utility room before I’ve even made my own bed.  It’s our normal to help feed and clothe and often re-clothe and bathe Michael.  To give him a snack.  And fill his water cup.  To give him another snack. And refill his water cup. To buckle him into the car. To open doors for him. To wash his hands.  To tie and retie his shoes.  To hand him bite size pieces of food because he can’t set down the “extra” parts of a sandwich or a piece of pizza or chicken nuggets, but instead drops them on the floor or throws them across the table. It’s our normal to constantly be aware of where Michael is, because he doesn’t know enough not to wander outside if a door is left open or wander away if we’re paying too close attention to his sister playing softball, or having a conversation with someone else. And he wouldn’t know how to wander back to us.

It’s our normal to have him be seated as much as possible because it’s a lot closer to the ground to fall when you have a seizure if you’re sitting down when it starts.  It’s our normal to listen for a sudden intake of breath that indicates he’s going to have said seizure and it’s our normal to count the recent number of seizure-free days and consider ourselves “doing well” when we realize a week has gone by without seeing any seizure activity.  And it’s our normal to feel an undefineable mix of sadness and fear when we realize the med that was controlling the seizures isn’t working anymore, and we’re about to go down a New Unknown Medication Path wondering what side effects, what efficacy, what problems, will this one bring.

It’s our normal to have blood draws and urine samples given multiple times a year to assess the functionality of his impaired kidneys.  To track the differences in various levels of kidney function and adjust diet, medication, and random factors (hey, we gave him some benedryl for his cold last week–apparently that affects his Creatinine number!) to determine if a trend is temporary or permanent.  And it’s our terrifying normal to have conversations about “what if” his numbers ever do start to decline in an unstoppable trajectory.

It’s our normal to constantly be waiting for a call from his Day Stay Facility (and before that his preschool and his elementary school and his middle school and his high school) to tell us if he’s had a seizure or hurt himself.  It’s our normal to monitor him for signs of neglect or abuse because he can’t tell us if anyone was mean to him in any way.

It’s our normal to assess every activity we are invited to, or any outing we would like to attend, based on whether it’s “Michael Friendly” or not.  Vacations, restaurants, get togethers, parties, festivals. How much walking is involved, how quiet is everyone expected to be, will he like what they have to eat, what kind of bathroom facilities are there, is there a place we can give him his medicine, how many people will stare at us…..

It’s our normal to watch our other children navigate their way through life with a brother that their friends don’t understand, can’t relate to, and sometimes make fun of. We’ve seen them, at various places in their lives be alternately accepting, helpful, embarrassed, and hurt when dealing with Michael.  We’ve heard comments their peers have made, and heard about comments their peers have made.  We try to give them the best advice we have on how to deal with people they will meet.  But the truth is, sometimes we don’t know what to tell them.  Not everyone cares enough to want to know who he is.  Not everyone can look past their fear of All Things Different to  stop themselves from making unnecessarily hurtful comments. That sometimes life sucks and they will be confronted with mean people and ignorant people and well intentioned yet stupid people.  At every age.

And it’s our normal to be guessing all the time.  What he wants, what he needs.  Whether he’s too hot or too cold or in pain or not feeling well.  Whether that new medicine upset his stomach or gave him a headache or made him feel loopy.  Whether that blood draw hurt or was a “good stick.”  Where in the world he threw his cup when he was done drinking from it. Whether he needs to use the toilet.  How he got that weird black stuff on his hands. Why some days he won’t eat much, and we have to worry about him losing weight.  And why other days he eats non stop, even though it doesn’t seem possible that his little body can process that much food. Why he won’t eat sweet things at all. What he’s laughing at, and why it’s so funny.   If he knows how much we love him.

Yeah.  Our normal.

The thing is, while our normal isn’t always easy, it also isn’t draggy or depressing.  Most of the time, our normal is quite routine.  We’ve been doing this, or some variation on it, for 25 years. We’re not weighed down or surprised by Michael’s needs or his neediness. Having to do these things for him is just part of who we are, and knowing who he is.  The same way we know making certain noises can make him laugh.  That he likes the activity and stimulation (and food!) at sporting events.  That he loves being in the water and walking outdoors.  That you can’t give him a hug, but he likes to hold hands.

So I’m not writing this to complain.  Or to garner sympathy.  It’s just a testimony as to how our lives are affected by Tuberous Sclerosis Complex.  One family that is part of a Global Family today.  Each with their own story.

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