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delayed INTENSE-ification

August 14, 2009

Hot Damn! (And I do not mean the sweet cinnamon drink.) When they call it Delayed Intense they mean they delay the intensity.

My little baby was burning up today >>>>>>>>>>> ER TRIP >>>>>>>>>>> Hospital Admission.

I believe that Papa and I have been taking this cancer thing pretty well. Learning and growing with each new thing and maybe having a few technical difficulties, but today we were

SCARED.

Since Monday, Isa was in the hospital receiving fluids, antibiotics, and around the clock monitoring. We were released yesterday at 5:00. Today, she received Vincristine, Platelets, and PEG at the outpatient clinic.

She came home and went straight to sleep.          No biggie.

She woke up screaming that she couldn’t walk.           No biggie.          She had TWO shots of PEG, one in each leg. She says this everytime. I went to her, talked softly, and kissed her head.

OUCH… I burned my lips she was so hot.

After a couple of restless nights at the Hospital, Papa had taken the opportunity to nap, but something in the way I called his name and started shouting numbers to him.

“38.8, .9. 39… Money… 39… .point 1,  point 2” with my voice shaking and squeaky.

He booked it to where we sat on the couch.

“CALL THEM, You gotta call them” he said,

taking the digital thermometer and the baby, while I ran around, not able to find my head. Instead of being pecked by chickens, I became one, with my head chopped off.  I got the number, called, they told us to come immediately to the ER. Then more running around like a half-dead fowl. We gave her 5 ml of benadryl because we thought she was having a reaction to the PEG which could include anaphylactic shock.

Money started cussing, (not something we normally do, mind you) because he decided the thermometer was broken. It was reading so high and when he tried it on himself it started blinking 8’s and then went off. He tried again and it was just plain wrong.

BUT…we had NOTHING ELSE to check her with!!!!

Thus I begin the big freak-out! She feels hot, the docs told us to come in to the ER, and now we have NO thermometer. I called the nurse again, told her that I totally over-reacted because the stupid, cheap, digital I got at a certain big-box store was worth the money I spent on it and that we’d be going to CVS to get another, and I’d call her back.

As I threw the bags in the car, the hospital fun bag—always ready to go, a bag of random food (chips and cereal, what was I thinking?) and a bag with sweats and t-shirt for Papa, he carried the lethargic Isa out to her carseat. Meanwhile Gg is packing for Isa, getting the hospital blankets and a tiny white bunny rabbit. (Thanks 2K8) She was on the ball and a big help.

Luckily, our town is as tiny as Lazytown, we reached the drugstore in record time, which is saying a lot where we live, where driving fast is a sport!  I rushed in, purchased a ducky new thermometer, then rushed out to check Isa again. EGADS, 39.0  OMG…. I CALL THE PHONE NURSE AGAIN with the new temp that is still ridiculously high, 102.2.  Miraculously she answered the phone EVERYTIME. This never happens. At least this small grace was on our side today!   I tell her we’ll be there ASAP.

Supposedly she called the ER, but when we got there, NO ONE seemed to know we were coming. In some ways it is so STUPID to take a child with almost no immunity to the ER. Papa said he saw a big green germ in the hallway smoking a cigar! (It’s okay, I didn’t laugh either.) Even though Isa was still acting lethargic and needy her fever was now 38.8.  It dropped .2 in the 10 minutes it took us to get to the hospital.

Isa screamed like a banshee. She hates having anyone touch her, during port accession. BUT, we have to keep her from touching the clean area so we hold her. It was nerve-wracking, we ended up holding her down.  Then after accessing, getting the monitors hooked up and 6 ml of Tylenol, her fever dropped. Way down. Down to below normal. 36. 5! (97.7) I coulda given her some Tylenol at home!!!!

She ate, yes, cereal and chips and watched movies. Why is she back in the hospital?  Is this some sort of evil ploy to get us to actually show her a movie made by that children’s entertainment mega-corporation  that we are currently boycotting? Why didn’t the nurses/doctors/nurse practitioners tell us that because she had a reaction to the platelets on MONDAY, that we should pre-treat her. This was only the THIRD time she’d had platelets and the 5th time for any blood products. We  keep any superfluous medications out of her. If the docs say that it isn’t necessary then we opt for less drugs. BUT…

This day was just plain STUPID.

That word aptly describes how I felt all day. The ER nurse said, “oh, you didn’t pre-treat her with Benadryl and Tylenol?”  Huh? the pre-treat combines those two drugs?  Huh? How I did not know what drugs they give is a mystery.  If we’d given them to her, then she probably wouldn’t have had any fevers. Ridiculous!!!

And now our “week-end” is over as Papa heads back to work tomorrow with Isa in the hospital again.

What you can learn from this…….

  1. keep more than one thermometer
  2. pre-treat before blood transfusions
  3. keep your bags packed, it cut down on our transit time.
  4. don’t let germs smoke cigars.
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6 Comments leave one →
  1. August 18, 2009 1:48 pm

    DI. I feel for you. We now have at least 5 thermometers! Old fashioned mercury, several digital Vicks basic ones, an ear thermometer, & temporal artery thermometer. We have a big basket where we keep all the medicines, “the binder”, EMLA, and thermometers. I even have a “grab n go” bag with EMLA, thermometer, and Huber needle that I take any time we leave the house… just in case. We haven’t had an ER visit since March, but just thinking about it makes me nervous!!!

    • August 18, 2009 8:42 pm

      Great Idea about carrying the needle with you. Think I will start doing that on visits to my hometown. Just to make sure! I am seriously thinking about getting a fancy one like they use at the hospital. Or something like it. Quick. Accurate and Handy!

  2. quinnsmama permalink
    August 15, 2009 6:37 pm

    My heart started pounding for you all. The panic that sets you described all too well. You all need a few weeks away/out of the hospital. I hope it starts ASAP. We will be thinking positive vibes for ISA. BTW no nurse or doc ever told us about the pre-treat meds and the exact same thing happens to us. Cant they write this crap down on a flyer and give it to us?? Now that we know I am going to pre-treat. Thanks for the tip. Much cheaper than the ER bill that would have to be paid instead. Hope you are feeling better soon.

    • August 15, 2009 7:31 pm

      Sometimes I wonder if stuff happens to us so that I can tell other people. Yes, today and yesterday they pre-treated with 5ml Benadryl, Not sure dose on Tylenol AND hydrocortisone. Just to be sure. She had platelets today. No fever.

  3. alt permalink
    August 14, 2009 11:57 pm

    But, what’s the word on her lungs? Still coughing? What a crazy day; I feel for you all. You’ve almost finished this DI thing right? You are all amazing. xoxoxoxo (there’s a set for each of you) p.s. I can NEVER EVER EVER find a thermometer when I need one. Never.

    • cheflucien permalink
      August 15, 2009 9:07 am

      Okay. 1. Lungs are fine. 2. Almost done with THIS DI, we have another 57 days to do this winter. Same protocol. 3. Thanks for th XO 4. I am gonna get a nice thermometer for everyone in the family. But what that means, I do not know.

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