WHAT THE!!!!

Can anyone tell my why? Why is it that doctor offices seem so incompetent! We had an ultrasound done for Little M last week and we were supposed to have an appointment with the urologist today. Yes, I said "supposed to"! Yesterday was Little M's sixth birthday and I was out getting his cake for a little family celebration (his party is on Saturday). Next thing I know, my cell rings, at 5:00 pm. Who is it, you ask? The friggin' urologist's office. Now, mind you, they had already called in the morning to confirm the appointment and told me to bring the films with me. I spent all afternoon yesterday while the chitlins were at school, reviewing the films, gathering information to ask my questions, and such. But, I digress. Being in Walmart, the reception can be a little iffy, so as I tried to answer the phone, it cut off and the call went to voicemail. I immediately checked my voicemail and was "informed" that our referral had expired and I needed to call them back to reschedule the appointment.

I immediately called the urologist's office back and lo and behold, the answering service picked up. (Yeah, that's what you get for calling to cancel with a parent at the close of business day! Friggin' answering service!) Needless to say, I told the service that someone from the office just called me and the service needed to patch me through to the office. I must admit that the transfer went fairly smoothly because within seconds, I was speaking with the same person that had left the message.

The conversation went something like this:

Office: Hi, we were calling to cancel the appointment because M's referral expired.

Me: What?! What are the dates on the referral?

Office: Uhm, August 21 through 27 of last year.

Me: Oh, ok, now, tell me...why is it that we saw the doctor in November if the referral was expired? Further, why, when the office called to confirm at 9:30 this morning wasn't I told about this so that I could do something about it? Oh, yeah, and why didn't someone tell me at our last appointment that the referral was expired so that I could take care of it? Or how about explaining why this wasn't brought to my attention when I made the appointment two months ago? I have done this long enough to know that when a referral expires, it is the doctor office's responsibility to contact the case manager to get the referral renewed, so who didn't do their job?

Office: Uhm, I don't know. The person who called to confirm didn't know the referral was expired. It takes five to ten business days to get the referral from your insurance company, so we need to reschedule.

Me: You know! I AM FED UP WITH INCOMPETENT OFFICE STAFF! You have no idea how this week has been for me in regard to doctors and all you can say is "Sorry, you need to reschedule"??? What about the health of my child? You people are driving me nuts!!!!!!

Office: Would you like me to have the office manager call you tomorrow morning?

Me: She's not there? Then, absolutely! I would like for her to call me the minute she walks in the door. As soon as she puts her belongings down and sits at her desk to begin her day, it should begin with a call to me! I mean, really, she needs to contact me immediately, because this is completely unacceptable!

Office: Well, I come in at 8:00 am and I will make sure that she calls you the minute she walks in.

Me: Fine. I'll be expecting a call from her at 8:00 am.

Office: Ok, what is your cell phone number?

Me: (Thought, duh, you just called me two minutes ago.... on my cell phone.... friggin' idiot!) It's blah, blah, blah.

Office: I'll make sure she calls you.

Me: Sure. (Insert attitude and skepticism.)

First thing this morning, I got on the phone with the case manager and told her what was going on. She empathized with me and told me she was going to call the office and get it resolved. I also asked the case manager to double check the referral with the nephrologist since that appointment is coming up and is twice as important as the urologist, given what I saw in the films.

Now, the question I'm sure you are asking is "Did the office manager call this morning?" My answer is a resounding NO! I didn't even call my case manager until 8:30 am and here it is, almost 10 am and STILL no call from the urologist's office manager. Surprise, surprise!

Frustrated does not even begin to express the emotions that I am feeling at the moment! I mean really, how are we supposed to trust these doctors if they don't employ competent staff????

My final words for now are "Watch out!" These offices have NO IDEA what kind of bulldog mother I am. When it comes to getting proper care for my children, I make my voice heard, loud and clear, without reservation, in order to get the best for my children. If they don't remember me because of how many patients they have, they will soon fear the thought of me if things are not handled properly. My words can be sharp daggers and I WILL advocate for my children. In all the years of battling with doctors, the one thing I've learned is that creating waves in an office and standing up for my child will gain the respect of the doctors that live up to the hippocratic oath. The staff may rue the day they I walked in their office, but my child WILL be taken care of.

Stefanie

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

Watch the time

I've been having some issues from my teenager about him checking in on time. His excuse??? He doesn't have a watch. Oh, yes, he has a cell phone, however for some strange reason, the clock on his cell is somehow forgotten about.

Then I was introduced to a site called Blue Dial. It has so many watches that are "in style" at extreme discounts! Click here to view a bunch of their casio G-shock watches.

Personally, I think my son could use this one:



It has a leather strap and also has an ALARM!!! Yes, just what he needs so that he can check in on time. Hmmmmm.... Christmas is coming....maybe if he's good, he'll get one.

Are all teenagers so picky and sassy? If I ever spoke to my parents the way he speaks to me sometimes, I would have gotten grounded our back-handed! I must admit, it is partly my fault...I take partial blame, but he is 17 now and he needs to learn responsibility. That includes checking in on time! Without lip! It's always: "Mom, why do I have to check in every hour and a half??? My friends don't have to check in at all..." I tell him that I am an involved parent and until he turns 18 and moves out on his own, he is to follow the house rules; which includes checking in on time.

I think he wants out of the house because it hurts him to deal with his youngest brother's syndrome, even though Little M looks "normal," the Big T knows that Little M is sick. I also think it has a lot to do with the fact that he is a teenager. It is what I call the "Me, Me, I Syndrome." He always tells me: "I am the son (sun), so you should revolve around me." How arrogant is that?? As if I didn't have enough to deal with already.

I digress, the short of it, Big T needs a watch to tell time so he knows when he needs to check in! I'll be shopping around for Christmas...if, and that's a BIG if, he behaves.

Stefanie

Just for this...

I just do not have the words for how I am feeling about the new developments with my Little Meryck. Then I received this email from my beautiful niece and it has touched me in a way I can't begin to explain. I hope it touches you the same way it touched me. Thanks Bean! I ♥ you!


*Just for this morning, I am going to step over the laundry, and pick you up and take you to the park to play.

*Just for this morning, I will leave the dishes in the sink, and let you teach me how to put that puzzle of yours together.

*Just for this afternoon, I will unplug the telephone and keep the computer off, and sit with you in the backyard and blow bubbles.

*Just for this afternoon, I will not yell once, not even a tiny grumble when you scream and whine for the ice cream truck and I will buy you one if he comes by.

*Just for this afternoon, I won't worry about what you are going to be when you grow up, or second guess every decision I have made where you are concerned.

*Just for this afternoon, I will let you help me bake cookies, and I won't stand over you trying to fix them.

*Just for this afternoon, I will take us to McDonald's and buy us both a Happy Meal so you can have both toys.

*Just for this evening, I will hold you in my arms and tell you a story about how you were born and how much I love you.

*Just for this evening, I will let you splash in the tub and not get angry.

*Just for this evening, I will let you stay up late while we sit on the porch and count all the stars.

*Just for this evening, I will snuggle beside you for hours, and miss my favorite TV shows.

*Just for this evening when I run my finger through your hair as you pray, I will simply be grateful that God has given me the greatest gift ever given.

*I will think about the mothers And fathers who are searching for their missing children, the mothers and fathers who are visiting their children's graves instead of their bedrooms, and mothers and fathers who are in hospital rooms watching their children suffer senselessly, and screaming inside that they can't handle it anymore.

*And when I kiss you good night I will hold you a little tighter, a little longer. It is then, that I will thank God for you, and ask Him for nothing, except one more day!


Stefanie