Hi everyone!

We had a bit of a scare yesterday -- another one! -- and I'm about to
do some research online to figure out exactly how upset I should
really be, and whether I should make a complaint to the hospital; I
know there are some medical types reading here, and a lot of parents
who've been through the ER wringer too, so hopefully someone has some
opinions for me...

My daughter Solana is 28 months old, and she has some ongoing medical
issues. She's been diagnosed as failure to thrive, probably due to
her milk and egg allergies (she's been off both of those for 10
months, though), she was recently diagnosed with asthma, and she has
VonWillebrand's disease, which is a bleeding disorder.

Von Willebrand's is a clotting disorder, (We actually found out I have
it too) where there is, in our case, a shortage of clotting factor
VIII, as well as Von Willebrand's factor. I don't bleed spontaneously
very often, and Solana hasn't had major bleeds, but she does bruise
spontaneously, and we need to watch her very carefully to make sure
she doesn't injure her head or mucous membranes. Most of the
complications from VWD are severe nosebleeds, bleeds in the mouth from
tooth injuries, and internal bleeding resulting from trauma. It
rarely causes joint bleeding, as you may have heard of other bleeding
disorders doing.

There is a medication that works to increase Factor VIII, which then
increases VW Factor, but the hematologist feels Solana is too young to
try it, and there are issues with the testing involved -- they prefer
to wait until she's 5 years old.

So....yesterday, we went to take Sage to school for her 1st day, and
Solana saw a little friend there, and ran to hug him, he ran to hug
her, and they tipped over, Solana falling on her back and head, and
her friend falling on top of her, on concrete. I was right next to
them, but I still don't know if she lost consciousness at all. She
screamed, but not *immediately*. I was stunned, and her friend was on
top of her anyway. So, he got up, she screamed, and I went to the
door, got another mom to stand with Solana, handed Sage to her teacher
(this is all within a 10 foot area) and turned back around to Solana.
The other mom had picked her up, and she was still crying, but she
calmed down once I took her.

We went back in to make sure Sage was OK, and then went to run
errands. Her hematologist has told us that we only need to call for
head injuries or if she gets cut and we can't stop the bleeding after
20-30 minutes (i.e. scrapes and bruises of the general toddler variety
are OK). But I wasn't sure if I should call. We had only driven for
a few minutes and Solana started complaining about her head hurting,
but not where she'd fallen, which I thought was weird, she asked for
ice, and then she said she was tired and promptly went to sleep.

So, I knew I'd have to call her hematologists. I called from the car,
and they were out of the office, so I called the number they'd left,
and the nurse I spoke with said I needed to bring her to the ER at the
children's hospital, to rule out bleeding in/on her brain. We've
recently moved, so this means we would pass another hospital on the
way, but I did what she said. I made the calls I needed to to get
Sage picked up properly, and we headed to the ER. We got there at
about 1:15, 45 mintues after the fall.

I woke Solana when I parked the car, and it was hard to rouse her.
The triage nurse was not in her room, so we put in our name (and the
hematology nurse I spoke with said they'd be expecting me) and waited.
After about 15 minutes, we were called to triage, and the nurse there
was very ... I don't know ... unconcerned, I guess. She thought
Solana seemed alert, but she wasn't, and I thought since I see her
every day at this time, and she doesn't normally take a nap, I knew
better what drowsy or hard to rouse is, and I told her "She looks like
she's about to fall asleep right there!" I also asked Solana to walk
for the nurse, because she was walking weird, but the nurse said she
thought it looked OK.

I was thinking that regardless of what the nurse's opinion was, that
head trauma to child with bleeding disorder would be fairly urgent. I
was wrong. After 1 hour in the waiting room, I told the receptionist
we were going to hematology ourselves, because this was ridiculous.
She just said 'OK', and I walked outside and used my cellphone to call
the other # again. They told me to find the triage nurse and ask her
why Solana was not being seen yet. So, I went back in, and asked to
see her, and she was horrible and mean and I almost started crying.

The reason I got so upset was that in the hour I'd been there, I'd
talked to the other parents, and I knew what the kids were there for.
I know it's likely that every parent thinks their child deserves the
first and best treatment, but ... you all know what Solana was there
for. The other kids that had gone in before us were kids that had left
school mostly (ages 5-7 or 8ish), with *clearly minor* injuries
(Clearly being the main issue, in my opinion. I couldn't *see* how
badly Solana was hurt). I swear. They sent a girl in ahead of Solana
who had bitten her tongue at school, and it wasn't even bleeding
anymore, and the 'wound' was no longer visible. I looked! I just
kept thinking -- my daughter's brain may be bleeding, and this person
has no actual problem! The parents weren't even going back with the
kids when they got called because they wanted to watch their soap
operas! (Perhaps I should mention here -- I don't know if this is PC
or not, but -- that this hospital is in a major urban area, and does
get a lot of people who use the ER because they have no PCPs or
Pediatrician.)

Furious. I was so mad. So the nurse tells me she's only been letting
in kids who are having severe asthma problems, and that I should be
lucky my daughter's breathing, because these kids weren't, and that
there wasn't even room in the hallway for Solana because of all the
respiratory distress. First of all, I know she was lying. I talked
to the parents. Second, Solana was in with honest to goodness
respiratory distress last month, and I sure didn't see anything like
that happening yesterday -- no running, no shouting, etc...

Third, when we got in there, there were open rooms, the hallways were
clear (not that I think they should fill the hallways, but it is
another lie -- I've been there when the hallways are full, and I know
what it looks like. I've been there enough to know that it's gotta be
one day a year maybe that the hallways are full during the day. It
happens [at this hospital at least] between midnight and three or four
AM, and very rarely in the peds side).

Finally, I saw on the wall chart, that no one there when we were
called back had been classified a 'triage 1'. Solana was a 1 when she
had trouble breathing. Yesterday, this nurse classified Solana a
'2.5', which really offended me. [Not only because I was led to
believe this was a real emergency, but because the '.5' just seems
plain rude. Maybe I'm wrong, but I don't know. She was in worse shape
yesterday than last head injury, and that was a 2] Believe me, I do
not bring my kids to the ER for no good reason. We have a whole
contingent of very good Dr.s who will see us the day of a problem if
it's anything they think they can handle in the office. I only go if
I'm told I really need to.

And I did tell the nurse that I found it very suspicious that the
hematology nurse (who conferred with a hematologist before telling me
to go in) thought this was something we needed checked out ASAP, but
once in the ER, it's no big deal. And the nurse on the phone didn't
even know Solana was walking funny!

Anyway, after about half an hour more (3:15), we saw a resident. She
said if it weren't for the Von Willebrand's, she'd send us home, but
she had to talk to several other Dr.s, etc.... Another Doc came in at
about 3:40, and said that she still thought Solana had an 'unsteady
gait', and since she was still complaining of pain, we needed to get a
catscan. Which is what I was expecting the whole time. They didn't
take us to catscan until after 4, then they forgot to send transport
to bring us back. I took her back to the ER on my own, and while we
were waiting, Solana's regular hematology nurse came in, because they
got back from their seminar (teaching the Amish about blood disorders)
and he saw her name on the list of people who'd called in. He's
wonderful, and we had a nice long talk.

He seemed as exasperated at the wait as I did, but he was noncommital
about saying 'you were treated badly' or anything like that, which I
understand. He said that the pain being in a spot when she hadn't
fallen was a bad sign, as was the falling asleep, and the continued
trouble walking. He said they're going to try and move up the trial
of the medicine, maybe she'll get to try it this year, since she is
prone to falling on her head (with a height and weight basically at
the bottom of the charts, and a head off the top of the charts, it's
no surprise), and he doesn't want us to be spending half our time in
the ER. Yeah! He left to go check on a patient who was admitted with
a bleed earlier.

Sometime after 5 they got around to reading her catscan, and it was
negative. They checked us out at 6. I was just happy to go at that
time. I kind of wish I would've just left, before being checked out,
but I don't want to screw up our insurance, and I don't know if that
would be a problem (just leaving).

Does anyone else think it's exceptionally slow to wait three and a
half hours after a head injury with symptoms (sleeping, uneven gait,
pain moving around her head) in a child with a bleeding disorder to
get a catscan? I'm still angry (obviously), but I don't know how
angry to get, if I complain. That nurse definitely lied, I know that
for sure. Maybe, even though the hematology department called ahead,
the nurse wasn't aware of the full extent of the clotting issue?
Should I have documents prepared to take with me in the future? If
you do think it was a long time, what would you do next time? (Last
head injury we waited about the same amount of time, but she had no
symptoms, so I wasn't near tears, really) . Does anyone know, if she
had been bleeding inside her head, would that amount of waiting made
things worse -- or is there anything that could have been done in that
time to lessen an injury if there was one? Or is it like some things
where if it's going to happen it's going to happen, and there's no
stopping it? In which case, why do they send us for catscans?!?

Thanks for reading, and any opinions/advice,

Tina.
(and the still sleepy, kind of grumpy but OK Solana, and Sage, who
loved school and almost didn't notice that I'd just tossed her in
there and run back out)