Tuesday, March 2, 2010

Crazy stuff...

Sorry it's been so long since I updated. I think I mentioned that Charlie has been having more pain. We treated her with tobramycin again. She got a little better again and then she got worse again. Sunday afternoon her nurse called me into the living room and said "you have to see this". She has Charlie's diaper half off and points....there's poop all up in her vagina and none around her bottom. None. At all. It took me a full 2 minutes to process what I was seeing. She has poop coming from her vagina. *begin freak out*

So I called palliative care first and they called the doc, who said to go ahead and bring her into the ER because they were worried about the risk of infection. I decided to wait until monday morning because they generally don't get anything done at the hospital on the weekend. I know the signs of infection and was just going to watch and take her in that night if I needed. So I took her in first thing in the morning. We sat in the ER for several hours. 2 doctors examined her. One doctor was condescending and rude when I told him I wanted to keep the internal examinations to a minimum. Do they not understand why I don't want people poking around in my 2 year old's vagina when one doctor has already examined her down there?

Well, they sent us home. With instructions to follow up with her pedi who will "probably order a barium enema". Why didn't THEY just order it!? Children's hospital...supposed to be one of the best in the country...passing the bill off to a little pediatrician in Pataskala who has no real pull to get these things done in a timely matter. I tell them that Charlie has been having unexplained pain...if there's ANY chance this is related I want to get this figured out and handled ASAP. Is that really too much to ask?

I still think they don't bother or try very hard because of her condition. If my healthy 5 year old had poop coming from is penis, I think they would be running every test known to man that day. Of course I can't say that for sure. That's just my gut feeling. Mainly based on the way we've been treated in the past. Like when she was convulsing uncontrollably for seemingly no reason. They didn't care. They didn't have answers. They didn't run tests other than the EEG, which came back clear so they just shrugged their shoulders at us. If Adrian was convulsing uncontrollably, they'd be looking for a reason, because he's worth saving. Charlie has a brain damage so what does it matter if they can't save her or help her?

If anyone from Palliative Care is reading this, please reassure me that the hospital is sucky in general, and they don't do this just because she is disabled. It might make me feel better. Or if they are doing it because she's disabled, be honest, but agree with me that they are douchebags. Please? I just feel like I need someone on my side at this point.


Amy said...

i know nothing about this hospital but if they are giving her crappy care b/c of her condition then they are douchebags. who are they to decide whose life has what value? praying for Charlie, i know i'd of flipped if that was happening to one of my kids

Debbie said...

Please tell me that you are writing letters to the Heads of the hospital administration. I would absolutely take it to the top! Oh I am sending you all the positive energy and support I have. Please kiss that little girl for us! xoxo

Kat - Ruthie-dos.blogspot.com said...

I know nothing of this hospital, but regardless of why, they are being total douchebags... and I'd definitely do as Debbie suggested and write letters and/or call the Heads in Administration... and have names to give them. Praying hard that they find out what's going on with her bowels and girly parts.

Michelle said...

Just so you know, lots of people are on your side! I don't whether it's better to hope that they treat all kids this poorly or just those don't deem worth the effort - but it's wrong either way.

You can bet if that doc had poop coming out of his penis, he'd think it was pretty urgent.

Hugs to you both - hope you get some answers and Charlie gets some comfort soon.

Anonymous said...

I am so on your side. If I have one learned one thing about doctors and medical care it would be that the majority of care providers do not really CARE so they ought to think about changing that term.

Sorry you are going through this. My son has a severe seizure disorder and autism and everything gets thrown into the autism bucket.

Anonymous said...

Any update on Charlie, mama? She's really been on my mind the past few days. Hope things are better!!

-Shea (DS & cs.org)