Live...life IS special

If you've read any of my blog, you know that I love inspirational stuff. I got this email from my mother which I opened today and wanted to share it with all of you. I'm learning everyday how not to wait for the perfect time and to live in the moment. Not knowing if my youngest will live to see adulthood is my reality and we don't "wait" to live...

A friend of mine opened his wife's underwear drawer and picked up a silk paper wrapped package:

'This, - he said - isn't any ordinary package.'

He unwrapped the box and stared at both the silk paper and the box.

'She got this the first time we went to New York, 8 or 9 years ago. She has never put it on , was saving it for a special occasion.

Well, I guess this is it.

He got near the bed and placed the gift box next to the other clothing he was taking to the funeral house, his wife had just died.

He turned to me and said:

'Never save something for a special occasion.

Every day in your life is a special occasion'.

I still think those words changed my life.

Now I read more and clean less.

I sit on the porch without worrying about anything.

I spend more time with my family, and less at work.

I understood that life should be a source of experience to be lived up to, not survived through.

I no longer keep anything.

I use crystal glasses every day...

I'll wear new clothes to go to the supermarket, if I feel like it.

I don't save my special perfume for special occasions, I use it whenever I want to.

The words 'Someday...' and ' One Day...' are fading away from my dictionary.

If it's worth seeing, listening or doing, I want to see, listen or do it now...

I don't know what my friend's wife would have done if she knew she wouldn't be there the next morning, this nobody can tell.

I think she might have called her relatives and closest friends.
She might call old friends to make peace over past quarrels.

I'd like to think she would go out for Chinese, her favorite food.

It's these small things that I would regret not doing, if I knew my time had come.

Each day, each hour, each minute, is special.

Live for today, for tomorrow is promised to no-one.


Stefanie

So much to say....yet not much to tell...

Ok, so, we went to the nephrologist and had a kidney scan done. It was not a pretty sight. Luckily, this time Little M was sedated. Last time was a nightmare. I don't mean any 'ole nightmare...I mean heartbreaking, soul crushing, yelling, screaming and crying kind of nightmare.

After he was sedated, which the medicine they used the nurse's call "milk." It is a white medicine that is supposed to make you drowsy and fall asleep, but can be easily woken up. Not only that, but it is supposed to help you forget about what happens, in other words, him being cath'ed again. Well, it took the child 5 doses of the stuff to knock him out. The nurse's and tech's were amazed at how much it took.

Finally, he was out and I watched the nurse like a hawk as she cath'ed him to make sure it was being done in a sterile fashion. Last time, we ended up in the hospital for 5 days with a life-threatening kidney infection from a non-sterile cath. Even with all the sedative in him, he still squirmed and winced when they put a cath in him.

After all was said and done and he was out and cath'ed, my eyes were glued to the screen, watching as the lasix went into his kidney as I sat right next to him, holding his foot. I watched as the lasix went into his kidney and then down through the tube that connects the kidney to the bladder (ureter). At one point, the nurses/techs said "Oh, it's going into his bladder now." I said, "Nope, not yet." Sure enough, sadly I was right... His ureter filled and finally the contrast went into his bladder. His ureter was so big and with this only kidney he had, let me just say, it wasn't very good.

I waited a week for the doctors to call me to find out what the next step would be. I got a call back from the urologist pretty quickly (same day!) and he said that Little M's ureter wasn't so good. The doctor wants to be on the conservative side because another surgery having to do with the ureter could make things worse instead of better. Little M's ureter is like a balloon full of water with a little tiny leak. The balloon tries to empty through this little leak but stays full because the hole doesn't get any bigger. The urologist is afraid that if he makes the little hole any bigger than it could lead to urine refluxing (going back up) in to the kidney.

The urologist suggested a test that will show Little M's true kidney function, but the nephrologist has to order it. So far, even though I absolutely love Little M's nephrologist, still no call back from him. I will be following up with him this week though.

The plan was to have the catheter out before Little M woke up, but that didn't happen. He woke up just a little bit too early and the nurse took it out while he was awake. Not a pretty sight. Like I said before, the medicine was supposed to make Little M forget what had happened....well, not my little one!

Later, after he was coming out and we had gotten home, I asked him what he remembered and he told me just about everything that had happened. I was in shock. Luckily, I keep meds on hand for painful urination and he took the meds pretty well. Probably because he is getting older and can understand a little more.

So....that's what has happened so far. The plan? Once I get a hold of the nephrologist, we will get the test ordered. After we get the results of the test, we will then test Little M about 3 months later and see if the numbers change. If the numbers change, then we will decide what to do after that. Options are limited and it looks as if he is headed for dialysis within the next 10 years (if we're lucky, otherwise, sooner).

For now, it's the hurry up and wait game.... this game SUCKS!

Stefanie