I’m not even sure where in the 24 hour period of a day I start “the day in the life as a parent of a severely disabled child with a life-limiting illness.” Is it when I wake up for the third time? Or is it officially at midnight? Or is it in the morning when my child first wakes up to begin his day? Let me start my second cup of energy-juice (aka: coffee) and ponder this one…

Ok, so we will go with when his morning starts. Brendan Bjorn, my son, usually wakes for the morning around 8am. Having said that, it could be 6am, 7am or even 9am, all depending on how rough a night he has had. Back up. Make that how rough a night “we” have had. When he wakes up, I go in to him, give tons of kisses and snuggles, and then reposition him in his medical bed because he undoubtedly has managed to wriggle away from the proper position all the pillows and various special-made cushions are designed to keep him in for sleeping. Then, his large size nappy will surely need changed. Depending on what I find, this could take up to 15 minutes. I know. The prospects are sometimes frightening. That done, reposition again, both him and the medical bed, back to the correct angle so he won’t gag and aspirate. Readjust the pillows under his arms so he won’t fall over to either side since he has no muscle tone and cannot hold his own body up at all. Bed rail back up and now it’s time to get his first med (medicine in SN parent lingo) of the day ready. Wait, gotta change the towel under his chin for drooling, too. That’s better. Wait, check to make sure his shirt isn’t bunched up behind his back otherwise it could cause sores on his skin. Ok, now, back to getting that first med of the day.

We could be pharmacists. We have more meds than we can keep in one press, let alone on one shelf. (Now if we only got paid the salary of a pharmacist, I think to myself…) First med of the day is for acid reflux. Break the tablet in half, put into the 10ml luer lock tip syringe with water, shake it, and then it gets inserted it into his Mic-key going directly inside his stomach. Back to his room, give med, more snuggles, then back to the kitchen to concoct his cocktail of anti-seizure meds. First up is priming the 60ml syringe with the 12 inch line with water. Drop in 2 Lamictal tabs, then the Epilim, then the topiramate compound and then the liver med because the Epilim has bad effects on liver function. Put some water in a cup for flushing the meds and away I go back into the bedroom. Attach the 12 inch line into his peg and slowly drain the 4 med cocktail into him, smiling and chatting to him all the while. What a smile he has. Flush the meds with the water, unhook the line, close up his peg, and back to the kitchen to get his formula feed ready. (I’m still thinking about that pharmacist salary…or even a nurses salary…)

Brendan was an oral eater up until he was 2 years of age. After 6 months of not gaining weight, the doctors classified him as FTT…failure to thrive…and we agreed he needed a feeding line to be surgically placed in his stomach. He was not quite 3 years old when that finally happened. It literally saved his life. He would not be here today if he didn’t have his peg for meds and formula to go into his fragile, failing body.

Back to the kitchen I go. It’s been about an hour now since I started the day with him and in the midst of it, getting my other son ready for school, fed, his lunch made, find his clothes for the day, make sure his teeth are brushed, etc. You get the idea. In fact, about this time my other son has to head up to his school which is a short walk up the road. Right, ok, back to Brendan. Where did I put the box of formula anyway? Ah, there’s the stack of boxes, in the office. Grab the 1,000ml container of formula, give it a good shake. Find the giving sets (feeding lines). Oh, they’re back in Brendan’s room. Got one, back into the kitchen, open the formula container, peel off the seal, and attach the giving set. Back to Brendan’s room. Oh, there’s the container of Dioralyte still hanging on the IV pole from his middle of the night feed that must be taken down now. Do that, hang up the formula container, run the plastic tube line through the feeding pump, clear the pump, reset the dosage for formula, and press the button to prime the line. While that is priming, it’s a good time to give him is respiratory treatment and then brush his teeth. Done, attach the feeding line, turn it on, and set his bed at a better angle for feeding, turn his colourful lights and monitors on to keep him entertained for an hour or so, and then feel free to grab another cup of coffee and a bit of breakfast before taking a shower.

That’s the first 2 hours of the day gone. Eat, shower, check on Brendan numerous times, and try to catch up on all the other things that need done. Emails…have I mentioned emails? How about phone calls? Doctors, social workers, nurses, HSE, therapists, schools, you name it. This journey comes with enough paper work to fill an office but no secretary to do the work. Oh wait, again, that’s us. (Can we add that salary to the pharmacist and nurse salary???)

Yesterday’s email included one from an HSE employee who is on Brendan’s care team. This particular email let me know that a respite nurse for Brendan has “still not been identified” and how sorry they are as they know how desperately I need respite, but, but, but. (Refer to my last blog and you will hear all about the need for respite).  Today I’ve already replied to that email, among others, and I’ve “indulged” by taking time to write this very blog. I’m watching the clock on the lower right hand corner of my lovely purple laptop and the feeling of panic is creeping in. It’s already nearly noon! How did that happen?! And I’m only on the second load of laundry! My other son will be home in less than 3 hours. Eeeek! Ok, don’t panic Tracy. You’ve got this under control. Right???

The rest of A day in the life…

Turn off the feeding pump, unhook the line, change another nappy, and get Brendan dressed. Sounds easy enough but keep in mind my beautiful son is nearly 5 feet tall/long and weighs about 34 kilos…and is total dead weight. He can’t assist in the slightest. He is completely floppy, so to speak. So, dressed and ready to lift him into his wheelchair. Strap him in, buckle seatbelt, blanket tucked under arms so they don’t get stuck in the arm rests, towel under chin for drool, shirt smoothed out behind him, socks and shoes on, strap his feet in, and…Done. Take his formula off the IV pole and attach into the feeding bag hanging on the back of his wheelchair. Plug it back into his peg and turn it back on. Ready to head out into to world, or at least another room in the house. Ah, must go to the post office and the shop. Right so, load Brendan into the accessible van (down the 2 steps with no ramp yet) and up the ramp of the van and tighten the straps that hold his chair in place. Off we go. Shopping with Brendan is a blog in and of itself, but picture a train where you push a wheelchair and pull the shopping trolley behind you and you’ve got the picture.

What’s that beeping? Ah, Brendan’s feed is done. No, false alarm. His pump is beeping because I had to put it on hold  because he was beginning to wretch at his feed. This is an increasing problem the past few weeks, originating last Autumn when his body began to grow intolerant of feeding in general. So, pump turned back on to finish the feed. Continue errands. Before I know it, it’s time to get my other son from school.

The rest of the day is a mix of nappy changes (which entail me lifting him in and out of the wheelchair), feeds going on and off, drool towels needing changed, and…well…life as it is. The evening routine is like the morning…same meds given once I’ve got him back into his medical bed and nappy changed. I hook up his Dioralite to run for 5 hours. That pump alarm goes off every single night around 1am, depending on when I get it started which is usually around 9pm. At that time, I wake up to beeping, get out of my bed and go to his room, unhook the line from his peg, clamp it shut and turn off the pump. There is an audio/video monitor sitting on my bedside table that helps me watch over my angel Brendan, and I go to sleep in the blue glow of the screen and with the monotonous sound of his feeding pump coming through the speaker. I hear every time he cries, laughs, coughs, or gags. Sleep is never uninterrupted. In fact, it is usually interrupted 3 or 4 times each night. Next thing you know, it’s time to get up again for a new day.

Some days, we don’t even step foot outside.

Some days, we want to step outside and run away.

Most days, we push on despite of it all, hanging on some days only by a thread called humour.

Now, about those salaries…