[Teacher8]

So, when I picked DQ up from the Children’s Hospital, supposedly one of the best in the west, her overall medical case manager/doctor, hands me a copy of the discharge papers (CPS got the originals), and says “Make sure you follow up with these doctors according to the timelines.”

Ok, no problem. So, the first follow up was to be within 2-4 weeks from discharge with the gastroenterologist and surgery doctors. I call the Children’s hospital number given for the Gastro division, and ask to make an appointment with the doctor listed on DQ’s discharge papers. The conversation goes like this:

Asst: I don’t see a record of DQ having seen Dr. Blah Blah. Why are you making an appointment again?
Me: Well, her discharge paper says to do so.
Asst: Why would she need to see a gastro doctor? I see nothing in her records that indicate that need.
Me: (perplexed look on my face) Really? She has a MIC-key button (g-tube device for feeding).
Asst: She does? Oh, yes, I see that right here. Well, she didn’t see any doctor here for that.
Me: Really? Her discharge papers show she had a barium swallow done with you guys twice.
Asst: Oh, yeah. Let me go find out if we can see her.

Ooookkkkaayyyy…
So, I’m thinking maybe that department has some issues, or that assistant is just really a dimwit. I get an appointment after waiting on hold forever.

I call the medical case manager a week later to re-order her prescriptions, just like I was told to do. The medical case manager tells me that she doesn’t understand why I’m calling her to re-order prescriptions, DQ has been discharged and is not her responsibility anymore. I tell the medical case manager that SHE handed me her card and told me to call her for prescription refills and anything else I needed. The medical case manager tells me she did not tell me that and she doesn’t handle anything once the patient is discharged. I ask her who would authorize the refills and how I get them. She tells me she doesn’t know, and to try DQ’s pediatrician. We do eventually get refills.

Now, today, I call to make DQ an appointment with Neurology.
Asst: (different girl b/c it’s a different department) DQ saw a neurologist? I don’t understand why she would have seen a neurologist. I show no record of that. Are you sure she was a patient here?
Me: Yes, I’m sure. (The asst is LOOKING at her record!!!)
Asst: Oh, I see here she came in Oct. She was discharged? (OMG!!! Are you kidding me?)
Me: Yes
Asst: Why would she need to see a neurologist?
Me: She suffered a traumatic brain injury.
Asst: I see that here on her record. I’m not sure what to do. Hold on.
She puts me on hold for 15 minutes. I gave up and hung up.

When we did get to see the Gastro Nurse Practitioner, it was for a whole 15 minutes. Conversation goes like this:
Us: Can DQ get her g-tube out?
Dr: (sounding shocked) Oh my goodness, no! She lost weight!!!!!
Us: She lost weight, really? She eats all the time…by mouth.
Dr: She lost half a pound!!!!!!
Us: Well, she is mobile now and she wasn’t when she was in the hospital
Dr: Oh, she walks? (DQ walked in with us). Then she lost weight because she’s not laying in bed! (No, really?!?) She still needs to be gaining weight on a regular basis, though, and until she does and goes 6 months without using the tube it stays. Oh, and give her 3 pediasures a day. (She’s not THAT underweight, if at all. She’s got a Buddha belly. She’ll be fat when we’re done!)
Us: Okay, no problem. We understand.
Dr: Now, I want to see DQ back in 6 weeks for a weigh in.
Us: Um, we live in (insert town name) and it’s a 4 hour drive one way. Can’t her pediatrician monitor her weight?
Dr: Oh, she wasn’t placed here in the city?
Us: No, we’re from ABC.
Dr: But why’d they place HER out there?
Us: SHE’S from ABC.
Dr: So what... her parents can’t possibly be getting her back, why wouldn’t they leave her in the city so she could be close to care?
Us: (staring in shock and not saying anything b/c we can’t)
Dr: Well, they are terminating her parents rights, aren’t they?
Us: (still not saying anything)
Dr: Well, her pediatrician can’t weigh her so you’ll have to come down here.

I’m thinking to myself “Why not? He has a scale?” But we were still in shock over her even asking us those questions that we just said “Um, thanks.” And left. I called her CW to tell her how the appt went and about not getting the g-tube out. The CW says “Oh hell yes DQ’s pediatrician can monitor her weight. Don’t make her another appt.” Fine by me.

If I had my way, I’d stop going to those doctors altogether. Oh, and now we get to take her to a different pediatric gastro doctor b/c her parents think a second opinion on whether the tube can come out or not is needed. But that’s another vent.

This hospital is CRAZY!!!!!!

[digmykids]

I sent you a PM

[ImpactingLives]

If it makes you feel better our Children's here isn't impressing me too much these days either!

Last week I took FS to a scheduled appointment, I was told that the DR got called for Jury Duty and no one else was avaialble to see him. I said "why didn't anyone call me to let me know." We did. Well, when I'm not home I forward all my calls to my cell, no one attempted to call...

Then today I called to schedule his feeding therapy and they gave me 3 time slots. The only one that didn't conflict with the other 25 appointments he has I will have to bring my other kids with me. They told me that wasn't acceptable. I asked "why, I am attempting to feed him with them in the room the other 6 nights/week?" She said "feeding therapy isn't about teaching him how to eat, it's about teaching you how to feed him, and we can't do that if you're distracted." Seriously...I've fed plenty of kids, I know how to feed kids...but apparently this is about me and not the screaming 11mo who won't eat.

[teacher1998]

We had a similar experience with our fd. She was the victim of severe abuse. Nurses and receptionists seemed incompetent, never acknowledging what was clearly in the charts or standing right in front of them. They always asked me questions like the ones u got. I think it was due to confidentiality issues. They were trying to see how much we knew. I will never forget sitting in the office explaining to a nurse all of fd bruises and injuries. She took notes feverishly. I leaned over and clearly saw a diagram of fd, with injuries labeled from the very incident that put the poor baby in foster care the day before! She had been there with her birthmom to be treated for a fractured femur. That nurse knew better than I did what was wrong with fd!

Good luck. Hopefully Things will get easier once they recognize you.

[mandylei]

OMG I am MAAAAADDDD for you!!!!!

[BAC4343]

So sorry for your trouble. I have found it hard to get medical help for my foster children as well. Some medical professionals have refused to see them especially if you have to take "the herd" (CWs & birth family) along. One of my kids had an appointment with a specialist and because the CW didn't show up for the appointment they refused to see my foster child and said I would have to find someone else.

One of our foster kids had to go a few times to our Children's Hospital and that actually was the only place that treated him well regardless of his situation. The doctor even stayed past his shift and wait because the CW couldn't get her act together and get them the court permission they needed.

[LLLmom]

That's annoying! Our GI wants us to go a year of no use to get his button out....I think it's typical but I agree weight checks are ridiculous to have to drive 4 hrs for! Crazy

[Teacher8]

Thank you all!!!!!

LLL, yea, I think the waiting thing is pretty typical too.

We don't have a problem with leaving it in, but we DO have a problem with driving 8 hours round trip in one day with a 3 year old (who, by the way, is a champ in the car, seriously the best I've ever driven with! Thank God!), and taking a day off work just to have her weight recorded! Um, yea, I don't think so. Glad CPS is with us on this one, and they said we can have the pediatrician monitor it.

[MamaTay]

I'm not sure if you can do this but I found it helpful to find a really good pediatrician and have all of the reports from specialists forwarded to him. As soon as any script was written, he was always the one who did the follow-up refills and such. That way we got medical follow-up and everything was centralized and coordinated. Again, you would probably have to get CW approval but it sounds like your CW is ok with that.

ETA: On the tube. I hear you! It is SOOOOOOO Hard to get tubes taken out. We have a tub that hasn't been used in 2 years and I am having to fight tooth and nail to get it taken out.