Monday, September 03, 2012

Pediatric Nurses and Autism

I'll tell you what, we had kind of a hard time with the nurses and doctors with regard to Anthony and his autism.  It was extremely difficult because I didn't have any time to worry about apologizing for his behavior or whatever, and then by the time I did, I was kind of MAD that I even had to worry about THEM!

When I got to the ER, Anthony and Mike were already there.  I've been to the ER with Anthony before, I took him when he had his first and only ear infection.  He was difficult to take a temperature, he didn't exactly stand still when the doctor looked in his ear, but it wasn't too bad.  He was only four though, then, and now it's more complicated, like everything.  Now he's seven and - ugh, it was the first time we were admitted to the hospital and it was over night and a lot of things were new.

But mostly, for me, it was that the nurses and doctors didn't seem to know anything about a person with autism, and I think that is complete and total crap.   We waited allll day to see the hematologist, and by all day I mean from like 8:30 a.m. until 3:00 p.m.  Anthony was literally climbing the walls when he got there, there was a bench/bed on the wall with the window and Anthony was standing on it, looking out the window.  The doctor seemed kind of horrified that I was letting him up there and the thing is, it was nothing, to me.  I mean, the window was getting smudged, but big deal, I figured, they could just clean it.  But maybe I was wrong - at my house that wouldn't be a thing, but maybe at the hospital it was?  So anyways, I made Anthony come down and come see the doctor.  He was mostly there to talk anyway, so it wasn't an issue.  I know the dude is a pediatric hematologist and probably most of the kids he deals with have leukemia or something - he works at a place called the Childhood Cancer Center, after all, but really?  I kept thinking, with all of them.  Really, you've never seen a child with autism before?

The nurse was nice but she asked me if Anthony understood English.  The Child Life Lady asked if Anthony wanted to come and do a craft.  Every single person on the floor asked me to have Anthony pee into a hat so they could do some urine tests.  Anthony is working on being toilet trained, I told them all, but he is kind of a weird pee-er in the best of circumstances, and these are NOT the best of circumstances, so I'm not sure how much success I'll have with it.  At one point, we sat in the bathroom for 90 minutes to get him to pee.

When the nighttime nurse came on, she came and introduced herself and said she'd be the one giving him the medication.  She said they'd push Benadryl and the medication through the IV and then he'd be connected to the IV all night for fluids.  She said he had to take Tylenol and I hoped they'd push those too but she said they could take it either orally or with a suppository.  I said well, he's not great with the oral medication and he's super annoyed and over it all, so maybe it would be best to do the suppository.  She said "what do you think, mom?  Should we try the oral?".  So we tried it and it sucked and she said "what do you think, mom?  How much do you think he got?".  It was all over my hands at this point and looked at the mess in my hands and on his chin and I said, um, I don't know.  I DON'T KNOW, I said!  What the hell, I was thinking.  Finally I said, listen - I have to bend to YOUR medical knowledge here, but if he needs the Tylenol and he won't take it orally I guess we should give him the suppository.  Sheesh!  So we did - she did and it was fine.  But I hated her for making me be responsible for any of it.  She told me that she had a friend whose son had autism and his name was Max and he was 25.  Once she gave Anthony the medication, she sat next to him and rubbed his hands and she said I could leave to go get a coffee or something, or take a walk, which I thought was really nice.  She called him Max all night, though, ha!

There was no way to close the door well to stop Anthony from bolting down the hall.  I wasn't too worried because the door was locked but it was kind of a pain.  I started just taking him to the bathroom with me when I had to go.  I was tempted to just pee in that damned hat and have them test my urine, just so they'd quit asking me about it.  The night time nurse put a ... kind of a bag over Anthony's penis to catch any urine but they kind of glued it and - ugh, it was just very unpleasant.  I asked at one point if maybe they could just do a catheter and she seemed kind of horrified.  I mean, I know it's unpleasant but man!  So was it all!  I felt like all night I was responsible for keeping him in his bed and connected to his IV and - it was all night, I was exhausted, Anthony was exhausted, it just felt like a lot of responsibility.  Finally at 6:30 I rang the bell for the nurse and - this pissed me off, too - the person said "can I help you?" and I said, can you please send the nurse down here? and the person said "can I tell her what you need?".  I said, unable to articulate it, as I was kind of upset and super tired and dejected, I NEED THE NURSE TO COME DOWN HERE, AS I SAID!  SHEESH!

So.  While I am of course grateful for our luck and I am hopeful that Anthony is going to be okay with regard to this ITP stuff and that someday it will all be a memory, I will not forget how we were treated. I certainly hope that anyone that is studying to be a pediatric nurse or a physician's assistant or ER doctor or whatever the hell will just try to get some exposure to autism so that they can maybe take it easy on the child who has it, or on his parents.  I was looking on line and found this article about it, which gives me hope.  Also at Anthony's school, the nursing students from one of our state universities come and do some work with the kids there.  So I'm sure it's changing, I just hope it's soon!


Pediatric Nurse Practitioner said...

Great article....Really the kids are so sweet and we are in a great fear during their treatment but It really great he will be fine soon.

Unknown said...

Found you via the Love that Max link-up :0

You should share the experience with the hospital. Seriously, they need to know how you/your son was treated and ways to improve. This is why I only go to a dedicated children's hospital with Boo. The one time I took her to a local hospital they didn't deal with her well at all. So we drive 2+ hours to the pediatric hospital even in an emergency.

I am so, so sorry you had such a horrific experience.

MarfMom said...

So frustrating! Luckily we have not had a hospitalization for M since his diagnosis. We did have a sleep study and that was a bit frustrating as they wouldn't let him have the crib with the bars that he and I both wanted (he's 3.5 years old) so I had to sleep in the bed with him. Other than that though, it wasn't too bad. I hope your son is feeling better soon!

Joanne said...

It's such a big hospital that the children's Hospital is in the Hospital! The hematologist was a pediatric hematologist! What I need to find is a dedicated hospital/ER for kids with autism only. Ha!