When you Spend the Weekend in Emerg, the Weekend Isn't fun.

There were always crabs waiting in the sand, salt ready to lick our faces and sea onions, thick and prepared for battle.

Us kids, we were shameless: too many summer afternoons were wasted running into those waves, laughing. We'd dare them over and over to push against our bodies, not tiring as we'd wobble to and fro against their strength. But then, we liked to wobble a little, our feet sucked over by that wet sand.

Oh, and sometimes we'd fall, of course. I remember that there were always seaweed pieces left wrapped around our limbs afterwards, though. Gifts, we'd say. We were young then.

I am older now and I too, see myself in pieces. These body parts appear disconnected from each other, labeled with scientific understanding and terms I do not fully grasp. Doctors talk about me. I hear them outside my room even now. I wonder if I've become a pin-cushion, a specimen to be pushed along, wobbling to live just a little longer. I am weary.* 

 

 

*I never did get the test done that I was supposed to get done. After seven hours waiting in emergency, I was sent home only to be asked to return the next morning at 7:30am for a dye test (to see if the neph tube was blocked). When I returned the next day, it was decided that the nephrostomy tube would just be replaced, as it had been in for over six months anyway. While I did not want to undergo the procedure to change the tube, it seemed like the prudent choice. I can now say that I am the proud owner of a new nephrostomy tube, and it is working well. 

I am also glad to report that the surgical team who performed the procedure were exceedingly compassionate and went out of their way to be kind towards me. Thank you, nephrostomy team. 

 

On Peeing and Smarties

(Note: I am back home from my latest hospital stay after having had a lymphocele marsipualization. While the surgery was successful, there were complications, and I am finding myself more drained than I expected. I am therefore posting an entry that I completed two weeks ago, back when I still was using the nephrostomy tube and bag. I will be updating more current information soon).

 

I admit that I fake peed today.

We are currently in the urinary woes of potty training our two year old son. Upon occasion, after having completed his toilet peeing duties and (usually) with his congratulatory Smartie still in hand, he has been known to request “now Daddy pee?”. And likewise upon occasion, “Daddy” (aka: Sean) will oblige. Parenthood is a strange journey.

So far, because he knows that I pee into a bag, our son has not bothered to ask me to participate in this ‘a family that pees together stays together’ activity*.

After completing his potty duties this morning, however, he quite suddenly looked at me with a keen earnestness, pointed at the toilet and inquired, “Mommy pee now?”

What’s a mom to do?

Soon after, I too, found myself perched on that toilet, my son’s expectant face uncomfortably close to my peeing area. After what seemed like an appropriate amount of time of just sitting there like this, I exclaimed (lied) “Mommy peed!”

His face beamed. He clapped his hands. And, as only two year olds can, his whole body wiggled in jubilance.

We said goodbye to the "pee",  flushed the toilet and washed our hands. And then, like the big accomplishment it was, we treated ourselves each to a Smartie.

 

 

*I am not a scientist. This has not been scientifically proven.

 

How not to Shower with a Nephrostomy Tube 101

Damn it.

Even taking a shower is no longer normal. 

When I had the nephrostomy tube put in last week, the ward nurses sternly warned me not to get the site wet (re: become a stinky person and don't shower. In the middle of sweltering August,. Oh you nurses! You so have a sense of humour...). But I obliged, fumbling for the past days with sponge-bathing and washing my hair over the sink. 

In transplant clinic on Friday, the nurses there informed me that I could indeed take a shower, but I would need to use Saran Wrap around my mid-riff a couple of times to keep any water away from the tube, 

So today I ambitiously took the dog for a (short) walk to the local Shopper's Drug Mart and bought some plastic wrap. I even paid the extra monies to get the name-brand kind, figuring it would stick better. I arrived home, got ready for a shower, and carefully wrapped my middle not once, twice but three times. 

I looked ridiculous.

The shower, initially, was great. Oh boy does running water and soap ever make you feel clean. I was happily shampooing my hair when I looked down and noticed that in-between the layers of plastic wrap was developing a large pool of water. This wading pool was directly over my site, the same one that was and is supposed to remain immaculately dry. Dang it.

I leaped out of the shower, attempting to simultaneously remove the now  wet plastic wrap from my body, (This is more difficult to do than it sounds, trust me). Once the soaking wet plastic wrap had been successfully removed, I proceeded to replace the bandages with dry ones.

Then the decision was before me: do I now do nothing and hope for the best? Or do I call the nephrologist-on-call and explain the mis-hap? 

These types of decisions do not look like much in writing (type), but the past nearly nine weeks have been an onslaught of decision-making, from the initial choice to accept the kidney, to agreeing to short-term dialysis (when the kidney was still "sleeping" after surgery), to biospy #1, to extra blood work, to the failed biopsy #2 and then getting the nephrostomy tube. My decision-making capacities feel stressed. 

Long story short: in the end, upon Sean's insistence, I  called. The nephrologist-on-call discussed it with another nephrologist, and it was agreed that no action should be taken, but that I would need to keep an eye out for any signs of infection. 

Phew.

I'm sponge-bathing from now on. I will gladly be that stinky person.