I realize our story is not remarkable. Other people have been through similar or more lengthy and draining health ordeals. I am just sharing our journey as it happens, not knowing where it will lead us. I am also learning to work within and around a health care system that can be daunting for the healthiest person, let alone one that is sick and caregivers who are beside themselves with worry. Of course there’s the fact that, being a writer, this is the way I deal with issues in my life, by writing about them.
I am losing track of time. Today is April 7th. My husband has been here just shy of three weeks. Doctor team consultants change every two weeks. We will be on our third GI consultant tomorrow, Monday, April 8th. Some days are less remarkable than others but it was difficult getting here. How do you show a busy medical team that someone really needs their help? How do you stand out in a crowd of very sick people? How do you convince doctors who are so overwhelmed with patients, and new ones arriving every day, that your case really is a priority?
Day 5 March 24
According to admissions records this is really Day 1, probably because they start counting when you get into a ‘real’ room paid for by the government, though I’m only guessing. It’s Sunday and I arrive at 12 noon with our daughter. My step daughter is sitting in a chair looking at her father. She’s visibly upset. She tells me that my husband has a virus and the doctors ordered strong antibiotics, currently being pushed into him via IV. She has asked to have a doctor come up to talk to us. She is told they are busy in emergency and it will be four to five hours. That’s o.k., I say. I’m not going anywhere.
But first, I’ll back up to explain…
For my husband, a virus is potentially lethal. Though he is admitted to hospital because of pain, during his first admission via emerg the usual blood workup found that he had a dangerously low white blood cell count. This essentially means he doesn’t have the ability to fight infection on his own. The hematology (blood specialist) team was called in to consult. We learned that, in my husband’s case, there are two potential reasons for the low white blood cell issue:
- The medication he had been on for many years, that may be why his GI issue has been in a 10-year hiatus, has been known to supress white blood cell regeneration, or
- He has myelodysplastic syndromes (MDS, formerly known as preleukemia). I have tried not to freak out since they told us this. He was given a bone marrow test but the results had, basically, been inconclusive to date. However, at discharge after his first stay in hospital we did receive a package of information about MDS and were given an appointment with a specialist, to see as an outpatient (but that had to be cancelled because my husband is no longer an outpatient now).
The specialist would be doing a second bone marrow test, which the doctors feel would be more accurate since he will have been off the medication for four weeks – what they consider the maximum time that someone with the slowest metabolism will get this medication completely out of their system. So whether he’s in hospital or out his second bone marrow test is schedule for April 10th (the day after my birthday – he was in emerg March 20th – his birthday and his daughter and eldest brother’s birthday too). We are told we should have results by April 12th.
Back to the present…At some point my husband starts to feel the pain again. I press the nurse’s call button, then lay on his bed talking to him to get his breathing back to normal before he either passes out from hyperventilating or vomits. The latter happens quickly. I dump the first huge bowl into the sink and fill up another one, and so on. When the nurse finally arrives with the painkiller he is feeling somewhat better. I am given a stern look and admonished for dumping vomit in sink instead of the toilet, through a door beside the sink. I apologize but the nurse turns on her heel and huffs out of the room.
This is the first time I have felt that we were not being treated with respect. Nurses are busy. I get that. But honestly, that was the last thing on my mind as I ran back and forth while my husband begged for the bucket to puke in. Couldn’t she just nicely tell me what to do next time? Then I think, am I just being too sensitive?
Soon after custodial staff come to clean up and I apologize many times. They say it’s no big deal and seem to understand.
At 5:00 p.m. I insist that my step daughter go home to her family, telling her that our daughter and I will talk to the doctors when they arrive. She reluctantly leaves, though I can see she’s feeling wrung out like a dishrag after watching her father at his most vulnerable for hours.
By 7:00 p.m. my husband is resting comfortably and my daughter and I are exhausted. I go to the desk to ask my husband’s nurse when the doctors will arrive – it’s been eight hours, not four or five. She says they are very busy. She asks what I want to speak to them about, adding, is it the virus? Yes, I tell her, but I have other questions. She says she will page them again.
A few minutes later the nurse and another nurse walk into the room and stand near the door. They both have their arms crossed and I know this isn’t going to be an amicable experience. We are told that the doctors are too busy to talk to us. I feel unable to express my concerns looking at their crossed arms and stern demeanor. I say I am just looking for some answers and given that the GI Consultant on his case is someone new the next day, I’d like to confer with the staff that will be leaving. My husband’s nurse finally says she will talk to someone about getting a family meeting set up and they leave.
And I think, you can request a family meeting? Why didn’t I ever hear about this? A meeting with the doctors and family members and some staff? Really?
Our daughter has been quiet. She rarely gets angry (like her father) but she is obviously mad about the way we were approached by the staff. I tell her she should speak up. She was afraid that I would think that she was interfering. I let her know that I need support to support her father. She agrees and says she will speak up if needed.
I tell her we’ll get things straightened out tomorrow. We go home tired and hungry, eat and go to bed.