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Isa’s Transfusion

April 4, 2009
Before having port accessed.

Before having port accessed.

Blood transfusion, one word, GROSS.  Without it she would die. Period. Jehovah’s Witnesses around the world keep proving this point. The nurse asked if I wanted a pillow case to cover it. I guess other people think it is gross too. I declined. Now, I want my medical personal out there to calculate this… she weighed 13.4 , her Hgb was 6.8,  they gave her 200ml of PRBC at a rate of 100.  Supposedly, they could have run it faster, (about 134) but chose not to do so. The conversation surrounding this set-up left me wondering if something about the rate of 100 was hinky.

Wednesday found Isa quite tired. She’d been getting progressively so, but Wednesday it was obvious; we could no longer deny the transfusion. Last week, everyone said, “transfusions are safe, there are no problems, we do it all the time…. etc.”  This week, the release noted some of the possible side effects or symptoms, as mentioned in Blood Transfusion, Blood Confusion. In fact, the nurse went on to say how dangerous it was, and that we should watch her very closely. This is the SAME nurse. She mentioned that most of the time the reactions happen within 15 minutes of starting the transfusion, so it is standard to check at 15 minutes.  The only thing I noticed is that her breathing became labored, and according to the nurse her respiratory rate was 23 or 28, I can’t remember.  She reminded us that reactions could happen over the next 24 hours and she “knocked on wood” that it wouldn’t happen.What a ridiculous bunch of crap. That is one thing I could say to the people at the hospital.

FOR THREE WEEKS we have been telling staff that Isa won’t eat anything. Every time we go in there we say, ‘She isn’t eating. We can’t even get her favorite foods into her.’ On Thursday both the nurse and the nurse practitioner said ‘Isa has lost too much weight… you need to make sure she eats.” As if we hadn’t been mentioning it every single visit.

Dealing with the western medical community is like dealing with an abusive spouse. They don’t listen, turn your words, then blame you for not doing it right. I have no idea why she won’t eat. Nothing. Maybe a bite here or there, but nothing substantial.  She may eat the top of

Once upon a time, this was a burrito. Before Leukemia this would have been devoured.

Once upon a time, this was a burrito. Before Leukemia this would have been devoured.

one piece of pizza. One bite of mac & cheese, one bite of a burrito. In January when we left the hospital, Dr Fallon said she needed about a liter (around a quart) of fluid a day. Up until just last week, she’d drink maybe four ounces throughout the entire day. She just wasn’t drinking, thus not urinating. So we focused on getting fluids into her, which we accomplished by way of oral syringe. Proud that we found a way to get her necessary water into her body, (NO she is not interested in juice, or anything else either, before anyone thinks they are smarter than us… ) we told the NP.  She suggested that we needed to get more calories into her, so trying to lead her into making a stupid statement, I say, “you mean like a 7-up?” Interestingly, she topped me, she said, “more like a milkshake.”  At this point I couldn’t help glancing toward her posterior considering she weighs about 310. Milkshake?  Not even protein shake, ensure, or anything like that. Needless to say we will not be following her advice. So don’t send us coupons to McDonalds.

Before everyone starts doling out advice about how to deal with this situation, think again. I am extremely versed in the verbal argument. Wish I’d gone to law school, I could argue any point, support any claim thus resulting in a much larger paycheck. Okay before you attorneys out there start commenting, everyone knows that you hate your job, wish you could do something else, like painting or drawing or get that book out. BUT we all know that unless hell freezes over, or you birth a baby,  you will still be pulling those big paychecks—even after the two years at culinary school when you realize that other jobs suck worse.

Back to Isa.

At home, the strangest thing happened she started walking all hunched over, and said that her port hurt. Of course, I am hyped up about the possible side effects, so I start taking deep breaths. Papa recommends that we go ahead with 5ml of benadryl just in case. Everything hurt, she was walking like an old dowager, hump and all.  Scary, especially knowing that blood transfusions can cause kidney failure. Of course that is worst case scenario, I asked frequently if she had back pain.

The Morning After

The second version.

The second version.

Isa still hunched over and complaining about her port gave me an inkling it was caused by her port bandage, but as quick as the thought came into my head it disappeared until Papa suggested the same. You see, just after the critique of Isa’s eating habits the NURSE WHO CANNOT WAIT, rushed through accessing her port. Isa has been fighting this since we started home care for some reason. As Papa & I encourage Isa to lay back the nurse hurries through accessing. Meanwhile both Papa & I are pointing out that her belly is wrinkled and the bandage is crossing over it oddly. She ignored us, finished with a side comment to the nursing student who was observing.

Friday morning brought Papa the chance to play nurse. He took off the bandage, and replaced it. The way it is written makes it sound as simple as the the nurses make it look. I guess after 10-20 years of doing it you get pretty good. Add to the stress of doing this, Papa being so angry that he has to do it at home. I suppose we could have called home care, but then we thought it was going to be simple. Mid-way, he switched to sterile gloves and a mask, just to make sure. Above you can see that Pops got it going on.

Her hump dissipated after the switcheroo, but she still was acting puny. Long naps, no food. etc, it is the same everyday.  We’ve continued with the fluid by syringe, even though the NP said, “well, I wouldn’t want you to be doing that in two years.”  What parent wouldn’t walk across coals with that syringe every hour if it meant that their child was getting enough fluid, for as long as it took? Hell, I nursed her for two and half years, what is a little water in a syringe once or twice a day?

Tonight she ate some of her burrito. She wants to stay inside, and basically sit on my lap. This morning we sat and cuddled for a long time. All the while I massaged along her spine, and at her legs, like the good Dr. Zhong suggested.

Going through cancer treatment is most parent’s nightmare, but most parents follow directions and respect external authority.

The patriarchal medical community is oppressive to patients, parents and workers. And when will the insurance companies and hospitals need a hand-out? Next time when you pass the Audi/Mercedes/Volvo in the parking garage, remember that some doctors do good work and not for a lot of pay. Next time you’d like to criticize us for any healthcare decisions that we may or may not make remember that hospitals are corporations that need money to fuel their machinations.  If you believe that the people working in these institutions are altruistic, then I’d consider you naive. Oh you nay-sayers, must I constantly prepare for your arguments. Obviously some people have benevolent notions, however, those are fewer than you might imagine. Yes, some  people have good experiences, but please before you make a comment about how wonderful your oncologist was as she stuck the endoscope in your anus,  see the aforementioned parents who follow directions and respect external authority.

Thank you for your time.

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8 Comments leave one →
  1. les permalink
    August 28, 2013 1:48 am

    Also.. Maybe a bit too late… But pediassure is working for us.. At least she has some nutrients in her…

    • September 9, 2013 6:52 pm

      yeah.. this was a long time ago for us.. We’re over two years off treatment! Thanks for posting. Take care

  2. les permalink
    August 28, 2013 1:47 am

    Ouch..Poor baby.. My little one got a really bad reaction to the tape they used on her iv line and on her lp site..i think its the tecaderm one… Home care trippled on the tape causing it to burn her skin… i had to change her dressing ..poor baby…Luckily her port was put in next day… we just had to go get her flushed and heparin put in correctly today because in the ER the nurse swore up and down he was following protocol flushing her after heparin… I know we are new to this… but i understand the importance of the heparin..he being in the field obviously didnt… since she wanted to go i knew one day wouldnt cloat her port…

  3. Stephanie Greenlee permalink
    April 9, 2009 7:45 am

    Nobody knows your baby like you do and it sounds like you are her best advocate. During my chemo last year, I had similar issues. Lack of appetite and was told to drink milkshakes (I did a few, but preferred fruit smoothies and soup), allergy to adhesives (try paper tape- not as strong but gentle to skin), uncomfortable port, lack of energy and so many more. It is difficult to decide if problems are caused by med side effects, the illness or the whole drama of cancer. I will tell you, after getting “a big bag of iron” as the nurses called it, I felt like I could walk miles and wondered why getting blood was not standard tx of chemo!?! It is gross, but made me feel so much better. Maybe knowing this helps?
    Hang in there,
    Stephanie

    • April 9, 2009 3:49 pm

      Stephanie,
      Thanks for posting, your information does help. Trying to get information out of her can be hard. She didn’t seem like she felt any better though. With all the different possibilities it is hard to know. She is tired today, but we are getting platelets, fluid, peg & vcr. I am looking forward to the interim maintenance. Once or twice a week for two months is a long haul. Thanks again for the adult perspective.

  4. Kate permalink
    April 7, 2009 8:52 pm

    Phoebe…you rock. Keep following your gut/motherly instincts and you will always do what’s right for Isa. You are your child’s best expert!

  5. Kathi Nelson Sawyer permalink
    April 7, 2009 12:50 am

    Early in my last pregnancy when I was only 10 weeks along with Luke, I had some unexpected complications. I was in the hospital for a week and had to have 2 blood transfusions. Without them, I was told I could’ve died. Yes, the thought of them is really gross, but I’m so thankful that my drs. knew how to treat my condition, my blood type was available, and my husband made the decisions he did, when I couldn’t. Somehow, someway we are able to do the hardest things for those we love, when they need us the most. Keep doing what your doing for Isa!

    P.S. I agree with Stephanie, Isa looks adorable in her new hat!

  6. April 5, 2009 10:50 pm

    All I’m going to say is that she looks fabulous in that hat.

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