Thursday, January 26, 2012

Yet Another Fiasco...

Ho Hum.

We went to do the urodynamic testing today.  The Dr. (the neuro urologist) was a nightmare.  He had the absolute worst bedside manner.  We see a lot of specialists, and this one was by far the absolute worst.  Some of his ridiculous comments included...calling Kendall "mentally retarded," and telling me to work on my "frazzle level" and "lowering my standards for her care."  I couldn't even do his horridness justice by telling you, but let's just say it was bad.  Really, really bad.

They took her back to the procedure room where her home health nurse and I held her down and a sensor with needles was placed in her rectum.  From  there, these nurses who "do this all the time"  (but apparently not frequently on young three and a half year old girls) proceeded to attempt over three times to cath her.  We didn't even make it to the part where they injected the dye for the test because she pushed out the catheter when they were finished taking out her urine.  In the room, the nurses informed me that they can do this under anesthesia.  They warned me that there was also the possibility of putting her through all this and the test result still not being read properly because of all the movement.  Kendall was screaming in agony, and I made the call to stop.

Our appointment with our urologist was cancelled by them and we were given instructions to schedule the procedure at the same facility under anesthesia.  The Dr. ran her urine and told me she didn't have a UTI, and then followed me out to the check out lobby where he made me cry again talking about how I need to take care of myself first if I'm going to be expected to take care of my child.

I guess in his eyes I'm a basketcase.

But he also doesn't know that I've never cried in front of one of Kendall's  Dr.'s before.  Ok, maybe I have, but not in a long time. I don't lose my composure easily anymore.  I had just spent an ungodly amount of time holding her hands while she screamed and writhed in pain.  I wasn't prepared to get the speech about how "God has a plan for my daughter," or the part about how "she has a lifetime of issues that will require me to face tough situations."  Especially from a pompous Dr. who specializes in old lady incontinence. 

Problem is, he's the only one around.  And supposedly the best.

But he doesn't have the ability to put a kid under anesthesia at our beloved Cook Children's Hospital.  They don't even have his role at the our hands are tied.  She needs the test, and we have to do it. 

I guess between you, me, and the fencepost, the most upsetting thing about this whole ordeal is this:  Because Kendall is considered delayed, and has a label of CP, and lots of other things, they didn't treat her like a typical three and a half year old girl.  They attempted to do this procedure on her while she was wide awake.  Completely aware of what was going on.  (She clenched on to her nurse's arm as she tried to put her down on the table, clearly petrified.)  And it took me close to 20 minutes to stop them.

So now we wait to schedule it under anesthesia.  More waiting, and more worry.

ps:  I actually shortened this post A LOT.  I really wanted to go into more detail, but I'm working on my frazzle level.


Team Carter Jay said...

Oh my goodness!! This just makes me angry FOR YOU. I hope that you an get the test done soon, and that you receive some sort of compassionate care when it happens. It feels terrible when you feel like the docs are only looking at your child's "diagnosis" and not your child. many prayers.

Anonymous said...

If you were here, I'd give you and Kendall a huge hug and I'd give Dr. Pee a swift kick in the balls.

Bronx Cataldo's said...

I think they all need a swift kick in the arse in that pee office. Finnian has had it done 2 times and we are going back again. Finnian has pushed the cath out but the last time they used a foley cath on him so he couldn't push it out. Like a g-tube button the foley has a balloon on it. Some one should knock that doc down on his arse and let some of the air out of his swelled head.

kelly in TX said...

Oh, I so wanted to warn you about that doc! I had intended to write you this week to warn you . . . but my dad's been in the hospital, and I've been quite preoccupied. He is terrible. My mom went with me to that appt when Chloe had that test done, and my mom is still traumatized by how horrible that doc was. And you're right . . . he's the only one around. Just to reiterate his "personality", the next time you go to uro, look at the big framed deal that has all the photos of all the docs in the whole practice . . . they are ALL smiling EXCEPT FOR HIM!!! The sight will again make your blood boil!! Sorry y'all had such a terrible time!! :(

Marcus and Jenny said...

Oh that makes me sick...and livid. I'm so sorry. Oh poor Kendall. I'm sorry you had to go through that. Why didn't they think of putting her under FIRST? that makes me so mad. Maybe I need to check MY frazzle level because I'm welling up with tears just thinking about it!

dannette said...

Well, I think my frazzle level would have involved kicking the crude out of the doctor. It stinks when we have no other option and have to have procedures done. We see one doctor every six weeks and I dread the time Meya and I are there due to comments made about or in front of my little girl, but we have to use this guy and he is good at what he does. Thank goodness we have a phenomenal Pediatrician, eye doctor, dentist for her!

Anonymous said...

It totally doesn't make any sense, though...even if Kendall DID have an MR diagnosis, that doesn't mean that she wouldn't feel pain. Come on, people, seriously! How does being considered delayed or having any kind of diagnosis that isn't "normal" (a word I loathe) mean that you can torture a child. Maybe they kick puppies on their breaks or something. I'm so so sorry that you and Kendall had to go through that.

Jennifer said...

Makes me want to throw up:-( Unbelievable.

Anonymous said...

Oh how horrific! I am SO sorry you and Kendall had to endure this! Praying you can find the best way to have this testing done for Kendal and to minimize your 'face time' Icky Dr. Urodyn!

(faithful lurker and fellow Yahoo CP Mommer)