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Day 40, DI, Admission

August 10, 2009

First of all, thanks to all my twitter followers who sent love, hugs, prayers and energy. I appreciate your patience with my tweet, tweet, tweeting.

Second of all, we tried to avoid this hospital admission, but obviously we couldn’t. We take the philosophy that things do happen for  a reason, and we expect the best for ourselves and our family. In that vein we realize that what we want possibly may not be what is best for us. Does this sound like acceptance to you? If not, it should. We are in the hospital for as long as it takes.

BACK STORY

As you read yesterday we had some trouble with fevers, low blood counts etc. If you look closely at Isa in the photograph you can tell that her color is a bit off. With the hard core drugs that she takes during the last bit of this Delayed Intensification, we expected these things.

Money and I decided last night that we’d take her in this morning to get blood. She had petechiae, (click on that word to find out more) near her port, where the tegaderm/bandage had been attached. Additionally, she had several large bruises on her legs. The color of each was more of a deep purple hue. Then this morning she woke up with more petechiae on the side of her head plus the pale lips.

It was OBVIOUS that we’d be making a trip to the clinic for some platelets and packed red blood cells.

TODAY

What a strange day. First as we are getting ready for breakfast, the sink broke. Sounds like one of those, ‘you know it’s going to be a bad day when…’ posters from the 80’s. But seriously, our sink broke. Then the parking lot was busy. Even though we got to the infusion room quickly, Isa fussed more than Thursday for her port accession. Then we thought we’d locked ourselves out of the house.

Her preliminary counts came back quickly, because they were critical. Wow, were they critical.  Isa’s on left, Normal Range on Right.

  • WBC  0 .4  (5.0-17.0)
  • RBC 2.07 (4-5.2)
  • Hgb 6.5  (10.2-15.2)
  • Absolute Neutrophil .1 (1.5 -10.2)
  • Platelets <4k   (150-450k)

Again, the ANC, the product of  a mathematical equation, was 80. On Thursday it was 600, and the previous Thursday it was 1400. In 11 days it dropped like a paratrooper with a busted ‘chute. Leukemia parents gotta love some f’n Cytoxan and Cytarabine, where would we be without them.

We guessed we’d be here about 5 hours, which is a good estimate for blood and platelets as long as the Blood Bank isn’t busy! The platelets came quickly, but the blood didn’t. As a work day for Papa, the minutes whittling away created some anxiety. After calling in to let his supervisor know that he’d likely be late, the blood still didn’t come. Apparently because it needed to be irradiated it took longer. Or perhaps it could have just been Monday.

Luckily  for us, we’ve connected with some VERY cool folks here who have been EXTREMELY helpful. He got a ride to the house, and found out that NO we did NOT lock ourselves out. At this point I thought our bad day energy had dissipated. With him getting outta there, Isa and Gigi behaving, the temperature fluctuating only slightly. All was going well.  *WOOT*

Just as the nurses were going to pull out her needle and  put a band-aid on her port, a last temperature was taken. And if nurses would swear, which they don’t (out-loud) this one would have said, “Shit.” It was the look on her face that told me, that the temp had spiked a bit. Not too much, but enough to warrant a second attempt at taking it and a talk to the doctor.

It was decided that Isa would receive the “going home antibiotic” called Rocephin. And that the hem/onc nurses would draw the cultures from her port and from a peripheral site, her wrist. And that we’d leave her accessed in case we had to return later. All of these things would save us time and headache in the ER later or at clinic the next day. Thank you hem/onc! Isa screamed like a banshee that she didn’t want the extra poke, but she offered her arm and even cleaned the site.

The diligent nurse took the temp every 5 minutes. Even though this is excessive, she could document clearly if and when a temperature spike occurred. None did.  Then at the 15 minute mark after receiving the Rocephin, Isa spiked to 103, or 39.7C. Damn, there went our chance of going home.

One set of numbers changed our plans.

Because it was so late only two nurses were left, and we could not be admitted directly from clinic, we had to go through the ER. Whee, everyone loves a trip to the ER. BUT remember the Hem/onc nurses had taken out the most problematic issues—the culture draw, and the port accession. All we did was get some Zosyn, the “becoming an inpatient” antibiotic, and a chest x-ray. (ER docs like to cover all bases and after 10 days of a cough, not so far off perhaps.)

Oh, but as with all hospital stays, which are never complete without a hurry-up-and-wait-moment. Ours occurred when the nurse came to wheel us to x-ray, because ostensibly they had called for us. But when we arrived in the darkened, after-hours x-ray department the techs had been called to PICU for an emergency. Meanwhile, Isa took this as her opportunity to start whining/crying about getting some food. Specifically, spaghetti with meatballs, like Papa makes it. She’d overheard the nurse say that they had Spaghetios. Trust me, the two are not even comparable! She had mac & cheese instead, but not until after the x-ray, and walk back to the ER, and waiting for the nurse to debrief some other nurse about some other patient, and well, do you see that…..

…..Nothing in the hospital is ever quick.  NEVER!  Sort of like construction. It costs three times as much and takes twice as long. Same goes for hospitals. If they say 20 minutes, forget about it. Like right now, I am WAITING for a doctor to give an okay to give Isa the medicine she is supposed to be taking each night anyway. THAT SHE’D ALREADY HAVE TAKEN IF WE WERE AT HOME!  Sorry for the shouting there.

Ultimately, the 5th floor oncology department seems to always be full. So we are in the 4th floor cardiac unit. Nicer room, it is private, lots of space. Papa showed up to take over, but I am still here typing the post for those who care.

The doctor told us the protocol here, was with 48 hours of NO growth on the cultures and NO temperature. We could go home. Last time they told us that the ANC also had to go up. She did not mention what happens if there is a culture growth. Probably more cultures and definitely more antibiotics and more days here.

Thanks to everyone reading this, and to those whose time and energy have been given to us. Thanks. We do appreciate it.

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7 Comments leave one →
  1. August 11, 2009 11:56 am

    Ugh. I feel like I got punched in the stomach. I’m sure it felt worse for you doing the whole fever dance. I hate that. I have been following Isa’s progress,and I have been totally rooting for her and for your family -checking the blog and being thankful for every day that she’s at home. You’re right though – it will be for the best. I hope everything goes as well as it possibly can, and that you all get to go home soon. Thanks for blogging.

  2. August 11, 2009 10:00 am

    A doc had concerns that Quinn was using a laptop!?! Both kids have had their own computer since they were two. Puh-lease.

    DMM, hang in there. DI does kick the kids in the a**. If the culture is positive, then you’re stuck until the Holy Trinity is reached. (No fever, no positive and trending up ANC.) I’ll be sending you many happy neutrophil thoughts and watching the tweets to see what’s up.

    Caveat: My iMac hard drive died. It’s going in for repair today but…I’m on Bradyn’s computer. 🙂

    • August 11, 2009 11:31 am

      Yeah, and not even a real laptop, a toy one! Love that you curtailed my name to DMM HA! Love it! Love your description. My favorite part about our hospital is trying to figure out who is the ONE doc with the answers. So far no one over the age of 30 had been here. So we’re still waiting to see a doc, uh I mean an attending.

  3. alt permalink
    August 11, 2009 9:54 am

    Thanks for the update. I wonder how in the world you can write so well after such a hell day?! Here’s to hoping no fever & no culture growth for 48 hours. Here’s also to hoping everyone gets some rest. I’m convinced that Mama & Papa are two very strong SOBs. I say that lovingly of course & believe you might just appreciate the “profanity” at a time like this. 🙂 Tweet me if you need me. p.s. How the hell does a sink break? Do you mean the pipes broke? Want me to come over and work my sink fixing magic?

    • August 11, 2009 11:29 am

      Thanks, I just write like I think, but certainly not like I talk! Yeah, the pipes, so no dish washing or dishwasher. Also, I just remembered I put a load of laundry in the wash but never dried. Lovely smelling stuff I am sure. Nothing much to tweet, just hanging out. Just watched Annie, so we believe that the Sun Will Come Out Tomorrow! Or maybe tonight if we get a doc who likes the way we smell. Surely that must be the criterion yes?

  4. Quinn's mama permalink
    August 11, 2009 2:21 am

    Oh no! We have been doing the fever dance all weekend. I am sorry you all have to be admitted. Why can’t they just send us home with the drugs, IV, and a nurse to come by the house and check on us every 8 hours. I do not know who suffers more through the hurry up and wait, the parents, the kids, or the nurses we take it out on. I hope your sentence into hospital hell will be quick. We will be thinking of you all and hoping for no cultures (ie virus) and lower temps. Hang in there. Hey Isa’s mom, Quinn has the same laptop. Does the monkey sound annoy the cr*p out of you as much as it does us? I had a doctor question Quinn’s use of the “laptop”. I advised we creating bloggers in the future? Or just facebook fanatics. Wishing you the best.

    • August 11, 2009 8:30 am

      That fever dance is sort of weird, because the longer we did it, the more chance of infection. BUT the longer we did it the less chance of admission. Luckily for me, I must have some hanging out karma, because, I don’t freak out on the nurses so much about waiting. But I definitely notice it! Ha, we actually have three computers like that, gifts from different people. The extremely weird thing about those, is that at the library recently Isa & Gigi could work the computer mouses. Had to be from using that Monkey Machine!

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