Showing posts with label chronic kidney disease. Show all posts
Showing posts with label chronic kidney disease. Show all posts

Sunday, October 4, 2009

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

Monday, August 31, 2009

When will I wake up from this....

Saturday before last, I went to the ER and I was told I had a "complex migraine," severe dehydration (still not used to Vegas heat, but carry water with me all the time now), and a severe flair up of my fibro. I was feeling a little funny on Friday afternoon, but I still pushed myself to go to work. As I was tripping over myself at work, even my co-workers noticed that I wasn't well. But still, I pushed forward. Saturday came and I couldn't even get up off the couch, my depth perception in my vision was off. I felt like I had one hand over an eye when I was trying to look at something, yet I had both my eyes open. Not only that, but my equilibrium was off. I had my son release my shift online (because we had online scheduling at Outback) saying that I was going to the emergency room. The hospital drugged me up and sent me home. The next day, I went to check too see what time I had to work, because yes, the glutton for punishment I am, I was going to go to work when I noticed that my schedule had been removed.

I sent an email to the bosses and told them what happened and that I had guessed that I was fired. The owner said that I could come back if I wanted. The other manager (who creates the schedules) wished me luck in whatever I decided to do. I wrote another email to the owner and told him some things that were going on with my schedule and didn't get an email back, so there went my job...Now I'm looking for a new job and have a wonderful prospect at Chili's, I just hope I get it.

As far as my little man, he neph said that it doesn't look that good and this Wednesday we are getting a kidney function test done to see exactly where the damage is. The thing I like about this neph is that this time they are going to sedate Little M! Yeah for that, but then I have to watch him for a couple of days afterwards since they need to cath him for that test. The time before last, when they cath'd him, I had to rush him to the hospital because he stopped peeing completely. That's when they put a cath to stay then he had surgery in his bladder and the docs put a tube coming out of his bladder it was collected in a urinary bag (suprapubic tube). That was a nightmare of a year!

It's so hard to keep thinking positively sometimes, but I force myself to. I do it, not for myself, but for my children.

We also had a fiasco the first day of Kindergarten with Little M because his pre-k teacher didn't let the K teacher know what is required for Meryck and I had to give her a crash course in it. However, what good did come out of it, was that I called the principal directly and told him what was going on. Next thing you know we had a 504 meeting planned within 2 days. What's even better is that we addressed both of my children and got both of them on a 504! See a silver lining in everything!

Things can get rough, but I will persevere! I will push forward, not matter how much pain I am in. I need to. My children (and now new puppies) are the driving force behind my persistence and determination....

Did I mention my desktop crashed??? Yeah, well, what can you do about that except get a new one. When that will be, who knows.



Stefanie

Tuesday, August 4, 2009

Not such good news....

So, today we went for an ultrasound for Meryck's kidney and bladder. Let me give you a little insight as to what I saw...
Here is an ultrasound picture of his kidney in April of this year:



Here I have tried my best to recreate the new damage on his kidney from the ultrasound taken yesterday. (The ultrasound images from yesterday are on films instead of cd's like the one that was taken in April, so I doctored it as best I could to show the difference.)



We await the doctors visit next week for him to see what our next steps are going to be.....


Stefanie

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