Mom & Me Five Archive

    That was my mother, at 0315 Saturday morning, standing in our narrow hall, supporting herself with either hand against the walls, silhouetted by the night light, calling to me in a voice I rarely hear, best described as plaintive.
    I immediately moved my bed (which is a futon, used on the floor, with "improvements") into her bedroom. We sat and talked, for awhile, in the eerie blue light cast by her bedroom night light; I "spooked" her until I was able to tease a few laughs out of her. Then, we talked about her discomfort. She couldn't say what she was feeling, or why. I asked her several questions: Had she had a nightmare? Was she frightened by something? Did she feel bad physically? Did she think she was close to death? She answered them all in the negative, but continued to insist that she "...just didn't feel quite right" and didn't want to "be alone". We continued to talk, for awhile, in the deep-night slumber party atmosphere until she settled down and we finally went to sleep. In the morning she was fine, although she remembered that she'd wanted me to sleep with her (even though I awoke and removed my bedding long before she awoke) and thanked me for assenting. The thanks wasn't necessary, I told her, that's why I'm here.
    Later that day I had an thought provoking conversation with an excellent friend. Upon learning what had happened the previous night, she told me that subsequent to blood transfusions she'd received before and after the birth of one of her children, she experienced vivid, unsettling dreams, although she didn't label them "nightmares".
    This rang a bell. On Thursday, between noon and 1700, my mother received her second transfusion in four and a half years. As recent readers will know, her hemoglobin, just prior to her most recent "routine" doctor's appointment in Mesa, had dropped to 8.4. A CBC drawn a week later, on 9/26/07 showed a further drop to 7.5. Her PCP called Thursday morning and ordered me to take her into "the nearest ER room" for a blood transfusion, which I did, at the Yavapai Regional Medical Center, the local hospital here. Mom's PCP, of course, is not on staff there, since he's in Mesa, but, after an initial CBC to confirm her low hemoglobin (it came in at 7.9, which seemed hopeful, to me), she was transfused, in the ER, with a unit of blood. Because her hemoglobin had climbed (at least according to the tests), I was only mildly surprised that the transfusion involved only one unit. Her last transfusion involved three units, but, at that time, her hemoglobin was at 5.6.
    She was not checked into the hospital. Once about 50ccs of saline had washed the last of the blood out of the unit packaging into Mom's body, she was released and we were home by 1730.
    I'm a little nervous about her condition, now, as I write. Post-transfusion, I reported to her PCP, faxing him all the paperwork I was able to glean from the hospital (not much) and the final instructions by the attending ER doctor. These included:

• Have a follow-up CBC done "sometime next week";
• Discontinue her 81 mg aspirin per day and her garlic and vitamin E supplements (both are natural anticoagulants);
• Continue iron supplementation as per PCP's instructions (she is now on 6 capsules of Niferex-150 Forte per day)
• Continue eating a diet high in iron rich foods.

    On Friday, Mom's PCP added the following prescription: A CBC every Monday (the first was drawn today) for a month, then a CBC every two weeks to follow for two months (assuming, of course, that her hemoglobin remains above transfusion level).
    There was a curious incident surrounding the prescription for regular, frequent CBCs. When Mom's PCP's nurse called me on Friday morning, she told me that the doctor was ordering a transfusion every Monday for a month, etc. This alarmed me. She and I discussed the difficulty I might have up here following this prescription. I told her that I'd call the hospital and see how I could arrange this, hoping that I wouldn't have to take my mother into the ER every Monday for a month.
    The call to the hospital was informative and frustrating. YRMC still refuses to recognize the prescriptions of doctors who are not on staff, the IV Therapy Unit informed me. However, if our PCP faxed her a prescription and called to gather information about the paperwork and tests they'd need and faxed this information as well, the woman to whom I spoke, who was very helpful, by the way, (my frustration is purely with policy, not with people, at least it's not often with people), she'd attempt to solicit the doctor who oversaw Mom's transfusion in the ER to underwrite the prescription.
    I relayed all this information by phone to our PCP's nurse. She assured me she would fax the initial prescription to the IV Therapy Unit, which she did. I followed up with a call to the Unit about fifteen minutes later. Turns out, the prescription mentioned nothing about weekly transfusions...only weekly CBCs for a month, then bi-weekly for two months. That was a HUGE surprise! I was certain I hadn't misunderstood, as, believe me, I was surprised enough, as it was, that weekly transfusions were being ordered.
    Back on the phone, with the PCP nurse: I decided to be diplomatic when I approached her about this disconnect and suggested, after telling her about my follow-up call to the IV Unit, that maybe I'd misunderstood. No, she admitted, I hadn't, she'd misspoken, through a couple of phone calls. That was a relief!
    I assured her that the CBC prescription could be covered by our standing order at Bradshaw labs, called the IV Therapy Unit back, explained the miscommunication and asked her to please forget that I'd ever talked to her (she laughed...she'd already faxed the ER physician with a request to underwrite the CBC prescription; luckily, she hadn't heard back from him).
    So, I am sitting here, today, reporting on all that's happened, reflectling on how good my mother looked this weekend, after having been infused with that peach undertone typical of her last transfusion, but beginning to look, today, more like pink crayon scribbled on white paper, which is how she looked just previous to this most current transfusion...and hoping, hoping, hoping, that I'm reading her physicality through eyes clouded by unwarranted concern. In a few minutes I'm going to call her doctor's office and see if they've been faxed the results of today's draw.
    In the meantime, during our Thursday ER visit and my Friday trying to set up transfusion appointments that weren't necessary, I had several conversations with the triage nurse and the IV Therapy Unit woman centered around my difficulty in finding adequate medical help for my mother up here. They were extremely sympathetic and suggested three different physicians (including the ER attending physician, who received high marks from both women). All three offices turned my mother down as a possible patient. In addition, the triage nurse informed me that, yes, it's true, there are only two hematologists in the area, and confided to me that neither is "very good". My intention remains to explore, this week, the possibility of securing the consulting services of one of them in order to expedite future transfusions, if needed. Although I'd prefer a "good" hematologist on consult who might be willing to explore my mother's anemia further without invasive testing and, perhaps, bring to bear the latest treatments and medications, my bottom line is someone who will sign off on transfusion orders so we can pursue them up here, rather than in Mesa. At this point, though, I'm not expecting success...nor am I expecting failure.
    I am, however, alert to the possibility that I may have to pack us up for travel to the Mesa hospital where she's been seen previously, Banner Baywood, for future transfusions and emergencies. This is where her last transfusion was administered and other emergencies handled. We have, now, an excellent working relationship with them. Her Mesa hematologist in on staff there, even though her PCP is not. In addition, despite Mom's PCP not being on staff, the hospital staff readily communicates with non-staff PCPs. Mom's crisis records are all there, as well...and this hospital covered YRMC's ass when my mother had a low-sodium crisis in August, 2004, which Dr. Seller's Market up here, the attending physician at the time, didn't bother to diagnose, but, rather, decided to lecture me on Medicare in rural communities. I ironically note, here, that Dr. Seller's Market was the ER physician who relieved the one who oversaw my mother's transfusion last Thursday.

Update at 1715:
    I notice I started this post just after 1500 today. I've been keeping it in draft, continuing it in spurts as I handle our life through the afternoon. Wanted to mention, though, that I am no longer nervous about her hemoglobin. Her PCP's office just called the results to me, bless their hearts, after I put in a call about an hour ago to find out if the office had yet been faxed the results (which are usually available to Doc Offices after 1400 on the day of the draw, if the draw happens before noon; available to patients and MPOAs the following morning): 9.6. That's comparable to Mom's blood draw five days after her first transfusion in June of 2004. I'm much relieved!
    Still, though, my optional plans, outlined above, remain in place. Although the ER service here was adequate, this time, it was well below adequate in two other visits. One out of three ain't good. As well, the reasons I consider service this time only adequate follow:

• Twice the infuser malfunctioned. It took several minutes for ER personnel to respond, despite the fact that several were visiting at the nurses' station during the extremely loud beeping of the infuser;
• The BP/RR/BOx monitoring machine took several tries and over a half hour of attention before it began to operate;
• Two nurses ignored my warning that putting my mother flat on her back was not a good idea, she would have trouble breathing. One of them even lied to me and told me my mother wanted to lay on her back! Funny, too, because I was there through the whole extended episode and know my mother never expressed this preference, but did express an unsolicited preference for being on her side, which was ignored. As well no one ever asked my mother her preference. My mother did, finally, end up on her side, after the nurses both observed that I was indeed right, my mother has significant trouble breathing while laying on her back;
• When my mother ate a meal delivered to her, the nurse attending her was completely insensitive to my mother's extreme discomfort in the hospital bed and only helped my mother into a more comfortable position after I'd asked for help twice and finally attempted to readjust the bed and my mother myself, which wasn't successful.
• When we checked in, I was informed by the information desk that my mother's PCP would be contacted with lab results, etc., through the hospital's "Hospitization Program". Didn't happen.
• My requests for copies of all paperwork (including tests) were continually ignored, until, finally, I had to drop pleasantries and demand copies, which were handed to me grudgingly.

    To be fair, getting copies of paperwork is ALWAYS a problem with medical providers. However, malfunctioning equipment isn't; nor have I ever before found RNs insensitive to their patients' physical comfort. Nor have I ever before been lied to, nor have promises been made, before, that were not kept. I know much of this had to do with the fact that my mother does not have a local PCP who is affiliated with YRMC. I don't consider this a reasonable excuse, though, since this has never been a problem at Banner Baywood. My mother has not always had a consulting hematologist who happened to be on staff there during her occasional visits for intense medical care.

    Saturday night Mom assured me, unsolicited and with a chuckle, that she would "allow" me to sleep in my own bedroom that night. I was surprised that she remembered the previous night. After I'd heard from my friend about the vivid dreams, though, later that day I'd run her experience by Mom to see if it rang any bells. She couldn't say, since most of the memory of her discomfort and her desire "not to be alone" had vanished. I'm thinking that the reason we didn't experience this reaction after the last transfusion is because the hospital kept her for a few days for observation to make sure that there was no residual reaction to the transfusion and to monitor her anemia to confirm that the transfusion was working...so, if she had a "vivid dream" reaction, it would have taken place at the hospital and it makes sense that I wouldn't have known about it.
    Funny, too, now that I've just typed that above, I remember that YRMC told me that they didn't need to keep her for observation because, "If there is going to be a reaction, it will happen within the first 15 minutes of the transfusion." That, by the way, is a direct quote from our first attending RN. I remember it word for word because of its direct contrast to what I was told when Mom was transfused in Mesa.
    One other curious thing. About a half hour into the transfusion, my mother began to sneeze almost continuously for several minutes. These spasms continued off and on through the transfusion and later into the night. During the third spasm (they happened about 15 minutes apart) I alerted the attending RN. She observed my mother, shook her head and said she was sure that it was not connected to the transfusion. Perhaps it wasn't. Perhaps it was connected to hygienic conditions within the hospital or within the room my mother occupied...and whatever was causing it walked out the door with us and took some hours, that evening, for my mother to shed. Who knows. Whatever. I'll keep all this in mind as my mother and I continue our journey together...and always have a bag packed, just in case we have time to seek emergency care in Mesa instead of here.
    Oh, yeah, remind me to mention the coffee cup thing, next time.
    Later.