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Too Low to Go

April 27, 2009

Thanks for your prayers and well wishes.

It must have been our highest good somehow, to stay in the hospital. I haven’t had a chance to publish this post

We are now home, but I wanted to publish this anyway.

 

 

Playing with TrainsQuite frankly, the news that her ANC went down was difficult for me to take. For about a moment I considered leaving AMA. Against Medical Advice. Even the doctor told me that in the past the Policy was to have an ANC of 500 before the patients could leave. Then that Policy changed to ANC of 200. Now the Policy is that the ANC has to improve.  So, Policy and Rules are keeping us here. NOT  Isa’s actual condition. She behaves as a healthy child would. She has not had a fever since we got here Friday 2:45 AM. Her fever came down on its own sans tylenol. She has had enough antibiotics to kill most bacteria. The problem…. her neutrophils are too low.  If they let us go home I could sue the hospital if something “went wrong” and well, that just wouldn’t be right.  WHAT IF SOMETHING HAPPENED?  Herr Policy just won’t let us go.

Policy, Insurance, and Law dictate how hospitals and doctors treat patients. 

Fantastic.

Isa is still getting antibiotics every six hours to kill bacteria. Meanwhile the rest of the family is getting sick beyond belief from the odd hours of sleeping, chilly hospitals, lack of proper food.  The cycle has begun.

We left the clinic on Thursday her ANC was 100. THIS WAS NOT CONSIDERED A PROBLEM. But today at 120, her ANC has become a problem. What could happen today that couldn’t happen on Thursday you ask?  NOTHING>>>>>>>> except that she could run a fever and have to go to the hospital. hmmmm….. maybe we should have been admitted on Thursday?  I did tell them that she had been complaining of stomach pain. Does anyone else think that this is ludicrous?  Lower and pain on Thursday, okay to go home. Higher and no pain on Saturday.. yet, must stay in  hospital.

Today she has

  1. no fever
  2. no pain
  3. has had 1300 ml of Zosyn every six hours since 4:00 AM on 24 Apr 2009

Staying here she has

  1. even more antibiotics that could lead to an imbalance in internal cultures
    1. Who hasn’t gotten a yeast infection after a round of antibiotics?
    2. The doctor did not seem concerned about this……”Why is she having discharge?” “Not yet!”
  2. more contact with other people. We might as well be at the grocery.
  3. sleeping in a room with an ambient temperature of about 60 degrees.
  4. touching floors, beds, toilets, and toys that have been “cleaned” but who knows how well. 
  5. parents and a sibling  getting more tired and sick
  6. people walking in unannounced

Sometimes I wonder if I am the only person who feels this way.  I am grateful for the good things….like her being okay, her cultures are negative, her numbers coming up. BUT the negative stuff sticks out in my mind as something that needs to be changed. As a whole we can work toward changing the norm. I mean when I was a kid, no one carried a water bottle.  So obviously as a nation we do change.

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3 Comments leave one →
  1. April 28, 2009 5:48 pm

    It is sorta silly to stay in the hospital where you can come in contact with more people and germs than at home. Whats worse is if you leave against medical care wishes, they will chastise you…not because it was your own body, but your daughters. Then if you try to explain why you left, people will probably believe medical workers before you. Even though you got inconsistent answers about what policy is.

    Meh. The good news is it sounds like Isa is doing good. Cancer really jacks around yor priorities in life…it makes some things look so trivial and unimportant versus fighting for life.

    • April 29, 2009 9:47 am

      Exactly. It seems so silly to really bitch about it, but I hate the hospital. The odd thing is not that they wanted to keep her, so much as why. They don’t really worry about infections, just infections that could become systemic. So, it’s not like they want to “fix” a problem (i.e. cure an infection), they just want to watch her to see if she develops a problem like become septic. Everything about cancer is dangerous. The drugs for a “cure”, the side-effects of the the drugs that could be long lasting, the debilitating weakness and the stress it places on the entire family, including the extended parts. I see why people start to say, I hate cancer, but does this just give cancer more energy? As far as leaving…. I suppose that is why they put the social workers on each and every cancer kid’s case. It is to cover the hospital’s behind, not to help the parents through any difficulties. The system is flawed because of the litigious patients that have come before.

  2. Anonymous permalink
    April 28, 2009 7:35 am

    you mentioned the unannounced walkins (hosptial staff, etc) and how kids touch everything in the room that is ‘supposedly’ clean.. When I had Jack – i was in the hospital 5 days – never once did anyone come in my room and empty the trash, clean my bathroom, mop the floor. Once did they come in and change my bedding… So, is a hospital cleaner — I don’t think so – they keep the rooms cold so bacteria/mold doesn’t grow.. I just love the ‘dirty pictures’ you took… Sad but true.

    Our prayers are with all of you.

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