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Jiggity Jig, Day 45, DI

August 15, 2009

Home again, home again, Jiggity jig, but I am afraid that I am the only fat pig here. Because we didn’t go to market, but to the hospital.

Hospital protocol is so strange. Everything about them is sort of strange.  The rules are set in stone and yet,  in other ways the rules feel so labile, as if created on a whim.

When I called on Thursday about Isa’s fever, the doctors/nurses gave us infection as the only source of fever. Alas, this isn’t exactly true. Quite a few known reasons could cause it.

  • Low hemoglobin
  • Chemotherapy causing a large die-off of cells
  • Allergic reaction to blood or drugs
  • Infection

But, as a corporation that could potentially incur some gigantic litigation against it, the rules state, ‘if you have fever you go to ER (or clinic if it is open) immediately.’ Of course this makes sense, to the corporation. And on Thursday, Money and I were scared enough to not care about the rules. Isa’s lethargy and high temperature was super freaky.

Once she received Tylenol it came down and never went back up. This is where we enter the odd world of hospital…… wavy lines……..

The ER has a tiny waiting room, and it is damn near always full. BUT because we have a  ‘Heme-ongker’, as they call us, with a F & N  [Thanks @NDC finally figured out what this meant.]  or fever and neutropenia, an ‘F and N-er’, we get to head straight back. And we get the luxury of having a room. Some folks stand in the hallway. The ER is a strange place in general, but each time I’ve been there, I have felt some sort of odd tension surrounding us, as a cancer family.

My guess is that some of this is from having to access the port. They obviously do it, but not everyday. Perhaps because accessing the port requires two people, we take time and staff.  At the Oncology department they can do it with one person even with  a child wiggling and screaming. Only when necessary do they have a second nurse, and that is usually just to hold the child down stabilize the child. Or maybe it’s because we know too much, or act like we own the place because we are there all the time.

Maybe I am  intimidating or something, always asking for what I need. “We still need the peripheral, could you please come do that now.”  “I need to get a sanitizing wipe for the televison controller.” “Where is that resident, it is a good time for her to finish the exam.”  “Where did you study?” “We need to let her direct the situation, she won’t scream as much.”

As an only child I am quite accustomed to getting exactly what I want, when I want it. And yes it does still work for me. BUT another part of it is because I understand hospital time. Or the lack of it.  The docs/nurses and all the people there seem to take care of what needs done, but in a seemingly random order. It works for them, but it doesn’t work for me.

Sometimes, timing is of the utmost importance. ESPECIALLY WITH CULTURES FOLKS.  Waiting too long will mean that you might have to stay an extra day in the hospital. RULE 1.: 48 hours from the culture draw is the time you can leave as long as nothing grows. Isa’s port cultures were taken at 4:00 and the peripherals needed to get done.  HOW TO BREAK RULE 1:  If the fever has been gone for 24 hours, nothing has grown and the ANC has gone up, ask to leave.

And sometimes the nurses/docs want to exam when it is stupid to do so. The last time we went to the ER it was 2am and Isa had fallen asleep. I parked my ass outside the door and would NOT let anyone in.  She was sleeping!!!  Her temperature had dropped and all of her vitals were okay. She was being monitored. Why go poke a sleeping baby?  I wouldn’t let anyone in, not even the resident. She, by the way, did not like that.  She said that she wouldn’t be able to come back and I said that I didn’t care. Ha! We weren’t going anywhere, no beds in the  hospital. We waited 14 hours in the ER that time.  This time there were no beds on Monday or on Thursday so we ended up in other parts of the hospital each time. *woot*  private rooms!

And, yes they clean the rooms, but do NOT fool yourselves into believing that they are clean. We found blood on something twice. And who knows about the nasty booger someone had picked just before changing the tv channel.  Normally I am not a big germphobe, but at the hospital it freaks me out. Wash your hands people. Wash your hands.

Perhaps this post has gotten away from me, but it had apoint.

Coming home.

This doesn't happen often.

This doesn't happen often.

The doctors finally came to see us at 4:00 and played a little Break the Ice with Isa. Then he said something that I did not know. That her ANC was 180.

Uh, that isn’t Zero. Uh, that is higher than yesterday. Uh, it’s been 48 hours and no fever. Why aren’t there Discharge orders in your hand man. I said, “That means we can go home.” He then asked, “Do you want to go home?”  I  was fully ready to stay for the night, but hey, I’ll take a bad night at home before a good night at the hospital any day!

Luckily the fellow,  a very cute and very skinny Chinese woman, was more than happy to let us go. The attending agreed and the intern signed the papers and we were leaving at 6:30. Money had left for work at 3:30. I had no car, but knew I would be able to get home. He ended-up driving leaving work, picking us up, dropping us at home then driving back to work. Total drive time 60 minutes. We decided to try the one-car method at the hospital this time. It sort of worked and sort of didn’t.

Things to take away from this experience.

  1. Pre-treat for blood products.
  2. Know the rules and how they pertain to you.
  3. Ask for what you want.
  4. Be willing to break the rules.
  5. Ask for what you want.
  6. AND again, ask for what you want, you might just get it.
  7. When asking nicely fails and it is really important, like pre-treating. Then DEMAND it. You are in charge of your own healthcare.
  8. I usually get what I want because I believe that I can get it. So change your attitude and it can happen to you.
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