Friday, May 29, 2009

today just wasn't our day

We began the day with high hopes that Mom would be leaving-- preferably in the morning. Well, the morning came and went, as did the afternoon... and by evening we knew that a Friday exodus from the hospital would be a lost cause.

We four guys lingered into the evening while Mom slept, curled up in a fetal position and lying on her right side-- the safe side. The neurosurgeons have declared Mom's stitches to be about as good as they're going to be, and while Mom's vitals are fine, one doctor (internal medicine) felt that she needed a transfusion to bump up her blood count as a way to give her more energy (more red cells = more oxygen) and to help her fight infection while back home.

We left Mom while she was sleeping. It was a little after 9PM; we felt bad for leaving her there all alone, only to wake up to a team of doctors and nurses, but we also knew that we would have to wake up early to be at the hospital early on Saturday morning. Once again, we were promised that Mom would be leaving. This evening, Mom is getting another IV infusion of vancomycin, after which the transfusion will occur. It's only a single unit of blood, and we've been told that this won't affect the potency of the vanco (as the staffers call it) in any way.

Mom will also be getting a walker and other equipment to aid her with this new and uncomfortable reality. Mom went for a tentative walk at least twice today, thanks to the help of some therapists. The trip was just to the bathroom and back, but it was nevertheless a milestone. She also had her helmet readjusted through the addition of more internal padding; the helmet had been moving around on her head, which had made Mom wince in pain.

Mom's home antibiotic kit was shipped to us this evening; the box of equipment was on our doorstep when Dad and I arrived back home around 10PM. The antibiotics themselves had to be refrigerated, so Dad quickly saw to that (the shipping package contained dry ice so that the product would remain safe while sitting outside in the warm weather). We had a mini-lecture on home care, but a medical professional will be visiting us tomorrow evening to explain more fully what needs to be done regarding the care and maintenance of Mom's PICC line. We'll be responsible for flushing it twice daily, and will also be administering her meds in most cases, as the nurse won't be dropping by every single day. The company providing the nurse and the meds is a private firm contracted to work with the hospital. The whole thing is very complicated; I don't envy Dad the amount of paperwork involved in all this.

The day began somewhat vexatiously: the morning nurse wasn't even aware that Mom had had a PICC line put in, and had tried to use the IV still stuck in her right hand-- an IV that had come loose and no longer worked. When I informed the nurse of why Mom had the PICC line, and how long she was supposed to have it, the response was a quizzical look that told me all I needed to know: there had been a breakdown in communication between the ICU and the non-intensive wing. The nurse was, basically, flying blind.

This sort of breakdown isn't the first we've encountered; last weekend, the ER mistakenly listed Mom as having been housed at a rehab center-- an astoundingly insane bit of misinformation whose origin remains unknown (Dad suspects that someone pulled the wrong patient's records, a hypothesis that makes sense to me). Doctors' names are routinely mispronounced and misspelled, which gives us a devil of a time in trying to figure out who's who. Nurses who check Mom's vitals don't always update the wall-hanging white board unless we, the family members, mention the need for an update-- an oversight that can affect the work of staffers who must tend Mom after the previous shift has ended.

As I think I mentioned a few weeks ago, it's primarily up to the family circle to make sure that medical staffers know everything that's happening. If the family sits back passively and allows the hospital to do its own thing, the results can be dangerous, as we nearly discovered for ourselves during Mom's first stint at the hospital. This isn't bitterness or cynicism talking; I'm sure the health care professionals are all well-intended and doing their best, and I don't resent them at all. But the ball is frequently dropped in ponderous bureaucracies, so no family should assume that their loved one will receive perfect care, even when the doctors say, "Don't worry; we'll take great care of her." What that statement really means is that they'll try, but the reality is that they'll need your help, and you'll need to be both persistent and thorough.

Overall, though, Mom's level of care at Fairfax Hospital has been good-- far better than the somewhat slow-witted level of care she received at Mount Vernon. Just yesterday, MV Hospital got back to us to say that, based on the bacterial culture results from last weekend, Mom might need further treatment. Dad shook his head in wonder upon hearing this. MV Hospital obviously didn't know that we (1) had already taken Mom post haste to Fairfax at the behest of a Fairfax-based doctor's advice last week, (2) had had her undergo surgery, and (3) had gotten her onto a rigorous antibiotics regime. Hats off to Fairfax Hospital for calling us so quickly last week. MV, meanwhile, needs to clean up its act.

Anyway, we're assuming that Mom will indeed be coming home on Saturday. She'll spend eight weeks in the house, vulnerable as a newborn thanks to her missing bone flap, undergoing IV antibiotic treatment (as well as resuming the consumption of her pre-therapy meds) and receiving periodic visits from a physical therapist.

Mom's 24/7 care will be provided mostly by Dad and me, since we're home all the time. For eight weeks, one of us will always be at her side, as she is too weak and uncoordinated to walk a straight line unaided. She will have to wear her helmet every time she wants to go anywhere, no matter how short the distance. Because Mom's blood pressure still drops radically when she either stands or sits upright, we will always have be on on the alert for the possibility that she might trip or otherwise collapse.

I don't mention any of this because I chafe at the upcoming duty and commitment. Quite the contrary: I welcome it. If I had the power to take this disease into myself, to let it gnaw at me instead of my mother, I would use that power unhesitatingly. Unfortunately, that's not a burden I can assume. All that I-- we-- can do, instead, is be there for Mom. And you know what? Being on call 24/7 seems a minuscule burden in comparison to what Mom is going through. All of us in this family bear it gladly. How could we not?


1 comment:

Anonymous said...

Yeah baby.

The government has a good campaign that basically acknowledges the existence of a disconnect in communication between health care provider and patient. It's a good first step.

Questions Are the Answer

There's also an awlsome TV PSA for this campaign that I'm a big fan of:

Oh yeah?