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
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
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.