A Matryoshka Doll or Boxes within Boxes

Back on 7Monti and here under different conditions, we notice more some variances in how nurses and orderlies care for their patients and what those differences can mean to a patient. Rich has been here for a week and a half. After leaving Mike and his party plans, Rich was with the general population on the lymphoma floor for a day or so. Then a room opened up for us in the stem cell unit and we found ourselves going once more through the double doors into a little room in the little hall… Amtrak cabin again occupied by us and our photos, games and tokens. Box within box within box. Like those Russian nesting dolls… matryoshka.

We’re welcomed by the staff we’ve come to know so well. They marvel at Rich’s hair since he didn’t even have eyelashes last they had seen him. We are thankful to be once more in their care and to have the luxury of a cleanroom and higher patient/nurse ratios.

Our first few days feel like we’re in an episode of House on TV as differential diagnoses are thrown about and test after test done to pin down the culprit of confusion and infection. Somewhere is a room with a whiteboard but one thing for sure, it’s not Lupus! Despite the pneumonia with its accompanying tests and concerns, we’re in a more relaxed state this time around since the rest and recoup is less nail bitingly new. And that gives us the leisure to observe the differences in how our caregivers interact and operate.

Carl Jung said “Learn your techniques well and be prepared to let them go when you touch the human soul.” How apt for our observations.

36826_20150116_230946_1__displayIt’s always joked about how it’s impossible to rest in a hospital. And in many cases, that is true. Vitals seem to be checked almost every time you breathe. During certain times of treatment, that is to be understood. Reactions to biohazards are nothing to mess with. Medications are to be administered on time… but are scattered haphazardly throughout the day as they are prescribed.

However, when the meds are stabilized there is no reason for vitals to be done as frequently and, from what we can tell, are not required to be. But there are those who work by the book… Every X amount of hours, vitals to be taken whether you are sleeping or not. That same thinking has one orderly turning on the room’s klieg light on at 2am although EVERYTHING IS LED AND CAN BE READ IN THE DARK. These certain folks cannot think outside the box regardless of the best needs of the patients… adding one more box to our matryoshka doll existence.

By no means is this a criticism but an observation on the variances in the interaction with our angels in scrubs. And a confirmation of what a difference it can make to the patients, their comfort and recovery, and to the overnight family caregivers who have work the next day, when meds and vitals are coordinated to maximize sleep time!

A few days ago we experienced the uber-ironic moment when the nurse woke Rich up at midnight to take a sleeping pill. This morning, another nurse set up and began Rich’s nebulizer breathing treatment while he had a mouthful of breakfast. Contrast that with the forward thinking nurses who tell us to ring the nurse call when/if Rich wakes in the middle of the night. Then and only then will they come to check vitals and administer the sleeping pill. These nurses and others like them will confer with us when they come on shift and discuss our plan of action for meds, walks, showers, sleep, etc. ensuring that we are all on board with the same schedule. We’re grateful these forward thinking caregivers are in the majority in our experience.

At one point, we asked our stem cell guru about Rich’s meds and whether it was crucial to administer them in a staggered manner. Ativan, which counters so many of the effects of the steroids as well as helping with neuropathy, was withheld by a certain in-box thinking nurse and we wanted to find out the why of it. Our guru assured us that it could be taken with all the meds at the same time with no issue. This allowed us to insist when in-box nurse kept pushing off Ativan, citing contraindications. We did accept her first delay but two hours later when we asked again and again she advised a two hour delay, we insisted. We cited the doctor’s approval. We pushed. And had a good solid night’s sleep without interruption. Sometimes, you just gotta do what you gotta do.

These observations are by no means meant to denigrate the people who care for us with grace and humor day by day. We have nothing but respect and gratitude to each and every member of the Hematopoietic Stem Cell Transplant Unit. Their caring, both in and out of the box, has been more than we can ever have expected. But it has been interesting to have the luxury to observe what it is that made a day or night more comfortable overall and how the people who come in contact with you can make the difference when they work in partnership with you. And, perhaps, how it is important to advocate for yourself when it is necessary.

That being said, we wait now for the doctor’s rounds and the confirmation that we are going home today. Being forward thinking ourselves, we’ve packed away our photos, games and tokens and our coats are draped over the chair, signaling our intentions… fingers crossed… we’re ready to leave THIS box within a box within a box!

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