Monday, December 8, 2008

Another hospital adventure...

Charlie had stopped tolerating her daytime feeds again and we had exhausted all our options, so I called her pedi and he said to take her to the ER since she was vomiting so much. I was iffy about it because I really don't like Children's and avoid it when I can. But the pedi said this was beyond his capabilities. So while I was deciding, Charlie vomited a lot of blood. Yup, I took a pic. I take pics of everything these days. It makes it easier when you can show the docs and nurses what's going on. I started packing her up right away to take her in.

So the ER was *packed*. And apparently so was the rest of the hospital. They had no beds upstairs so even though they wanted to admit us, we had to stay in the room in the ER. Charlie was on the bed and I was slung across three hard chairs. After a while I thought, "This is silly! She's tiny, she doesn't need that whole bed to herself!" So I strapped her car seat (which we brought in because my mom couldn't stay and I was going to have to call a friend to bring us home) to her stroller and and put her in it. She slept great like that so I took the bed for a while.

After 30 minutes or so they came in and told us they had a bigger room with a bed and a crib. So they moved us there (still in the ER). I had to laugh when I saw this bed. I understand that they have some kids who act like monkeys, but Charlie isn't one of them. They still insisted on having all the rails up and the top rails down. Where did they think she was going to go!?

We stayed the whole night in the ER and then the doctor came in and told us she thought Charlie should get a GJ tube. I was hesitant to do it but she insisted it was no big deal and worth a shot. So I consented and they took her down at about 11 am. It only took about 10 minutes and Charlie did great. All they do is put the tube in her original hole and feed a longer tube down to her intestines. No sedation, no pain. So here's her new and (hopefully) improved tube. There's two ports instead of one, but looks very similar to what she already had.

Soon after she got her GJ, they got us a room upstairs. We had an awful time getting things she needed and I'll spare everyone the details, but I'm once again extrememly disappointed in Children's. They aren't very concerned with their patient's comfort and basic care and this is totally not acceptable to me. I started pushing for discharge ASAP. They like to see the kids up to full feeds before they go home, but I was pissed by the first night. They don't like that I fight with them, but what else am I going to do? They neglect my child and act like that's just how things are done. I'm sorry, but it's not ok to just not feed a baby and then ignore the fact that she's screaming in pain and puking bile!!! THAT is why I argue with them! They are freaking morons who have no business telling me how to care for my own daughter.

But she got a new hat out of the whole ordeal:
I don't like having to fight with the staff, but in the time we were there, I was lied to, manipulated, and given 10 different care plans by 3 different doctors. Charlie was in worse shape at one point than when I brought her in due to their negligence. I ended up having to convince them she was ok to go home, even though she was up to full feeds, her blood work was fine, and she was having lots of wet and poopy diapers. They didn't give me any real reason why they wanted to keep her. Just that they wanted to watch her another night. That's great and all, but despite the fact that Charlie has medical issues, she is NOT the center of the universe and we DO have lives that need to go on. If she starts doing poorly, I'll come back. But we can't just waste time sitting in a hospital room. I'm cranky because this whole time I'm battling a UTI and have no access to meds. If I get a full-blown infection, who's going to take care of Charlie then? They don't think about stuff like this! I tell them, but it's like they cannot think past that moment and that point in time.

I already regret the GJ, but part of me thinks she might actually benefit from it and I need to just give it a chance. I'm trying to be patient, but so far, I'm not impressed. Anyone know how much longer I should give it before throwing in the towel?

11 comments:

Emily said...

We had a gj button for 6mos this year and it was great for us! /if there's anything specific you have questions about feel free to ask.

ady said...

WTG on telling them your mind! Don't feel bad about it. I've decided that's how it HAS to be done or your child is going to be neglected, without a doubt. We're to the point of bringing all our own meds/feeds etc so when we start getting the runaround we just do it ourselves. Hope the GJ does well!

Shauna said...

We brought meds/food too since the same thing happened last time. But they wanted to switch her formula, so I waited as long as I could and finally hooked her up with the old formula. Then they got mad that I didn't follow their non-existent care plan.

Jodi said...

Good for you for standing up for charlie. our regular hospital is like that, but luckily the childrens hospital even tho it is 4 hours away is wonderful.

I hope you get some meds for the uti,and you get healthy. Momma has to stay healthy for Charlie.

I hope everyone is feeling better really soon.

Lisa said...

I'm so sorry that your experiences with Children's have been so awful. I hope you are documenting all of this and sending your thoughts to the president of Children's. They need to know. :(

I hope Charlie is feeling better.

Anonymous said...

Sorry to hear that Charlie is feeling so sick.

I did have to laugh a little at the *crib*. My daughter would be one of those *monkeys* but I can assure you if she was sick enough for me to bring her to ER....she wouldn't be getting out of regular crib......

Take care

momtoS said...

Hi there...
Just popping in again. I wrote the above post. I am a blog lurker from MDC. (I am momtoS). Just coming out of hiding as a Charlie Fan!

Take care! HUGS to you!

B said...

Out of the closet here too - Charlie needs an official fan club! Bethany - bdavis337 on mdc. :)

Carrie said...

I'm so glad you told them what you had to say! We are our children's advocates, and we both will do what it takes to get answers and help for our kids! Charlie is so lucky to have you!! I'm sorry she is going through such a rough period :(

samandjimblock said...

I just wanted to come out of "lurking" and post a comment :) I follow Ms Charlie regularly. MDC ROCKS!

One Christian Mom said...

I am totally new at this whole feeding tube thing, you and I "met" on P2P, I am only 3 weeks post-op, but I would say stick with it. My daughter is 5, and 23 lbs because we resisted surgery for so long, I wouldnt do it that way if I had it all to do over again. I know, from experience, how difficult hospital staff can be, I argued to go home as well after a week. They wanted her up to full feeds, and I thought that was rediculous when she was doing so well. I wish I could offer you better advice, but I hope you are feeling better!
Shellie