Tag Archives: hospital

Eenie Meenie Miney Mo

Contrary to popular belief, I have not run off with a Columbian drug lord to live a life of luxury and danger on the proceeds of his illicit operations.

Neither have I locked myself away with some obscure order of nuns under a strict vow of silence.

I’m still here. I’ve been busy. Let me tell you about it.

In our last exciting and apparently (according to one reader) lengthy episode, my Girl came home from the hospice with an infection in her shoulder. To say it was unexpected would be like saying, “Wow, who knew autumn would turn up straight after summer?”

She’s been home only one night from the hospice. I give her pain medication. It doesn’t help.

The next morning, my Girl has a lump the size of an emerging tennis ball on the upper part of her shoulder blade. Worse still, her blood sugars have soared to the point where the meter gives a readout of, “Man, are you ever in trouble.” She’s clearly unwell.

I call my doctor. She makes out a prescription for more antibiotics. I call the hospice. The nurse zooms straight to our door. This is serious. I speak to the hospice doctor. Although the hospice would normally advocate non-intervention, she tells me the infection is reversible, and they advise me to send her straight to hospital.

When we arrive, we’re whisked straight through the Emergency Room and into the Acute Unit, all thanks to the calls made by the hospice doctor. The ADU nurse takes my Girl’s blood sugars, temperature, and vitals. She tells me that she’s seen her notes, and gently advises me that one option is to heavily medicate my Girl, and let her go.

It feels like a good option. She could slip away in her sleep. Out of the pain and into the hands of whoever waits on the other side. I swallow back the tears, and accept that it may be my only option.

Boy, am I ever wrong.

There’s a bed on Ward 5. I’m disappointed. We’re practically on a first-name basis with the staff on every ward except 5, and Maternity. I suspect one day we’ll do a stint in Maternity, but I can’t imagine the circumstances. I’m doubly disappointed to find she’s sharing a room with three others: two middle-aged women, and an anorexic girl with a 24-hour watch on her. The nurse tells me the 24-hour watch will benefit my Girl because they can keep an eye on her as well. All I can do now is go home and rest.

The next day, I manage to catch the doctors doing their rounds. We have three choices. Who knew we’d have that many?

They can: a) put my Girl under a general anaesthetic, and cut out the abscess. That means a couple of inches across, at least an inch down. It won’t be so much a wound as an excavation site. I’m not keen.

Then there’s option,( b) open it up under a local anaesthetic on the ward. According to the doctors, this would be excruciatingly painful. Again, I’m not keen.

After that, there’s option (c) do nothing, and let her go.

Everyone tells me there’s no “right” decision. They look to me. The stress of the decision is agonizing. When the phlebotomist arrives to take blood, I tell her she’s not putting any more holes in my girl, because that’s how we got into this position in the first place. I tell her to take her cart and go! She tells me she has to take blood for the operation. I tell her there isn’t going to be any operation. She argues. I make her regret arguing. Then make a mental note to apologize when I next see her because she’s only doing her job.

I speak to the Palliative doctor, the surgeon, the nurses, the hospice doctor. They all reiterate that there’s no “right” decision. They tell me they wouldn’t want to be in my shoes. It doesn’t help. Hell, I don’t want to be in my shoes.

Exhausted, I go home and call up my Warrior legion of “Outraged and indignant” supporters. They give their opinions, adding that it’s not an easy decision, and throw in a little outraged indignation for relief.

So far: The anaesthetist is reluctant, the registrar surgeon is on the fence, the ward doctor is gunning for option (a), three nurses say they’d hate to have such decision, the diabetes nurse tells me to follow my gut, Chookie Lou tells me to do whatever feels right, my Warrior Legion offers a variety of angles and possible outcomes, the hospice still feel it’s reversible and that something should be done soon.

I’m confused and even more exhausted. I have zero medical training. How am I supposed to make these decisions? I call the Palliative doctor. I tell her I don’t want them to put her under a general anaesthetic. I tell her my Girl would never survive it. She tends to agree. In the meantime, they prescribe oral antibiotics and keep her comfortable.

Then a break! The consultant surgeon wafts in with an entourage of several young doctors. He looks at my Girl, inspects her shoulder, does a General Custer hand signal for us to follow. We squeeze into a tiny office and he gives his verdict:

He would not put her under a general anaesthetic. (I heave a sigh of relief). Neither would he give her a local. That would be excruciating. He tells the registrar surgeon that the best option is to spray-freeze the spot, nick it with a scalpel, open the wound up, and let it drain.

I’m thrilled. It’s quick, and it’s simple. What’s more, it’s the best outcome. Especially when two days later, a second abscess emerges on the other shoulder. I’m horrified, but at least we have a way forward.

My Girl is moved to another ward. In this room is a chatty woman my age, an elderly lady, and another anorexic girl with a 24-hour watch. I’m spending around 5 or 6 hours a day in the ward, so it’s to my delight, that I find these other three patients are keeping an eye on my girl when I’m not there.

Slowly, but surely, my Girl responds to the antibiotics. She’s spent twelve days in the hospital, so I’m completely thrilled when they tell me she can come home.

The wounds are dressed daily and doing well. She’s come off the syringe driver, leaving her alert and active enough to go back to her program for a couple of hours a day.

She’s almost back to being my beautiful Girl again. Last week, I spoke to my counsellor. I regaled the events above, all the trials and tribulations, the stress, and the horror. And you know what she said?

“You know, it was never your decision.”

I’m like, “What? They asked me what I wanted!”

Yep. Turns out, that’s true. The medical staff might have asked me, but they never expected me to make the decision. And frankly, if I’d made the wrong decision (in their opinion), they could have overturned it. What they were seeking was my buy-in; my agreement to the route going forward.

Who knew? Because I certainly didn’t.

So take heart from a spot of advice from me: If you’re a carer, a mother, or anyone with someone’s else’s life in your hands, you can make a difference with your opinion, you can put your two-cents-worth in. But the final decision is not yours to make.

I took a lot of comfort knowing that. I think you would, too.

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Filed under Coming to the End, Parentlng alone, Terminal Illness

And Just When We Were Getting Comfortable…

Remember that old song, “What a Difference a Day Makes?” That’s rapidly becoming our theme song. On Tuesday (two days ago), my girl complained of sore ears, sore tummy, sore legs, sore everything between. When your vocabulary is limited, “symptom strafing” is often the only way to get your point across. So I took her to the doctor where I counted off all the various ailments, adding that her blood sugars had been going up and down like the needle on a politician’s polygraph, and the thrush in her mouth might have returned. The gurgling sound in the back of her throat the last few nights completely slipped my mind. Until yesterday. So Wednesday morning, cue the opening bars of said theme song.

The Girl has had a restless night, so I let her sleep late. At 8:30 a.m., I waft in and raise the blind.

The girl looks decidedly pale. Her chest is rasping like a blacksmith’s bellows and her blood sugars are horribly low. When I attempt to sit her up and feed her some honey to get her blood sugars up, she groans and her eyes flicker open. Then close.

A wave of panic hits me.

I call the doctor – no instant reply. I call the hospice support nurse, then the district nurse. There’s a decision process you go through, weighing up the options and the possible outcomes. Do I? Don’t I? What if I’m just panicking? But what if I’m not?

The Girl looks terrible, so I call the ambulance. By the time the paramedics arrive, her blood sugars haven’t moved, and her temperature has plummeted along with her blood pressure. Further readings in Accident and Emergency tell us her temp is two degrees below normal, and her heart-rate is half its normal pace. In the back of my brain, I’m thinking, Thank God I did the right thing. Then the coin flips.

While the doctors take her vitals, insert a catheter, study her notes, I’m hovering and getting in everyone’s way and asking, “How is she? What’s happening? What do you think?”

I suspect they want to say, “Give us a bloody chance, will you?” but they smile and tell me they’ll let me know as soon as they know “– which, of course, is code for “Give us a bloody chance, will you?”

the stomach pain etc. He tells me that in his opinion, the Lactulose would have been better.

Typical. You ask sixty-seven doctors a question, you get sixty-seven different answers.

An x-ray show she has shadows on her lungs. Not one lung – both. That could indicate one of two different scenarios: When her blood sugars dropped, she may have aspirated. Maybe she lost consciousness and saliva ran to the back of her throat and into her lungs, and that’s caused pneumonia.

Terrific! Why didn’t I check her blood sugars? Why didn’t I sit her up when I heard the gurgling? Dammit all! Why didn’t I mention it to the GP when I was there? How could I be so stupid?

Scenario Two is that she’s her liver has deteriorated to a point where it no longer provides a thickening agent to the blood, and that now her blood has thinned to a point where it leaks across the capillary walls and is filling her lungs.

Why didn’t I do something earlier? Why didn’t I prop her up in her bed at night? How could I have let this happen?

It’s obvious this isn’t the first time the doctor has seen the expression on my face. He places his hand on my arm and says, “Stop looking for ways to blame yourself. This was going to happen. Regardless.”

Somewhere in my brain there’s a voice saying, “He’s right. There was nothing more I could have done.” But somewhere in the dark recesses of my mind, I’m still scouring my memory to find that moment, that clue that should have told me this was coming so I could have avoided it.

By 1 p.m. the catheter has emptied her bladder and a laxative has ‘unblocked’ her a little. Against all my expectations, my Girl has rallied. Her temp is back up, heart-rate increasing, blood pressure rising. I heave out a huge sigh of relief. I’m exhausted.

She’s out of the woods, but she’s not back on the road. This is only a clearing.

My wonderful neighbour arrives. She’s acting support crew and she’s brought bread rolls and smoothies. Despite my repeated thanks, she has no idea how much her help means to me. The Girl is moved to the Observation ward until a bed on an upstairs ward becomes available.

While we wait, a nurse sweeps in and asks what The Girl wants for lunch. I tell her mashed potato. She tells me she can’t do individual items. She says there’s a set menu. I’m wondering why she asked in the first place. Again she asks what The Girl would like. I tell her we don’t mind. Miraculously, she finds a menu with mashed potato and a spare meal for me. I ask the head nurse if The Girl can eat. She says yes, but only sitting in an upright position. They’re worried about the danger of her aspirating. I’m wondering if they think I’m a complete idiot; that I lie The Girl flat and pour drinks down her throat.

So I sit her bolt upright and as I’m spooning soup into The Girl’s mouth one millilitre at a time, a second nurse whisks in and tells me she shouldn’t be eating. There’s a hushed debate out in the corridor, and a chart is affixed above The Girl’s bed. Apparently, she can eat mashed potato and now she can drink in sips.

s blood pressure has dropped. I gulp down coffee and soup and return for a second bedside vigil.

For the first hour, I fully intend staying with her. There’s a comfortable chair in the room and a nurse brings me blankets, but every time I close my eyes, the squeak of shoes heralds yet another blood pressure reading…a temperature check…her pain medication – “No, not Codeine, that blocks her up”…a change of pain medication, Aarrrgghhhh! Zombiefied, I head home again.

This morning there’s a call. The Girl is asking for crayons, a colouring book and her mummy. I don’t care if she eats all the crayons. Hell, I don’t care if she eats the book. What could possibly happen? She’ll end up in the hospital?(don’t answer that).

In a couple of days, I suspect The Girl will be home. We’ll fall back into the routine and one day The Girl’s health will deteriorate and we’ll jump back on this merry-go-round. How many times, I have no idea. But here’s the thing: I’m not an overly religious person, but I’ve come to this conclusion: We have an alloted time on this earth. With all the best intentions, we can intervene, medicate, and treat for symptoms and pain. But in the end, the body decides when to call time. There is nothing we can do to change that. This is not my Girl’s time. I cannot take responsiblity when that time does come. I must remember this.

I probably won’t Until then, I’m still blessed.

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Hope and Failure

For some while now, The Girl has been in decline. She’s become more fragile. She walks with a tottering gait, she’s slow to respond, and her appetite has decreased. Thursday night, she didn’t want her dinner. She was doubled over, face practically in her plate, so I fed her. Then I put her to bed. She staggered out at nine thirty, bouncing off the walls, saying she had a sore tummy. I put her back to bed. I worried. She threw up and looked terrible, so I called an ambulance.

Going into Accident and Emergency is a last resort. It’s the decision I take when I’ve exhausted all the other options, when I think there’s nothing else I can do. We arrived at ten thirty. We waited. We saw nurses, waited; saw doctors, waited some more. Finally,  at four thirty the following morning they took her to the assessment ward, and I went home.

Friday morning the specialists arrived. Doctors, nurses, consultants. They questioned, examined her, studied her notes. Just after lunch, they gathered and quietly drew me aside. I stood surrounded by a semi-circle of doctors, junior doctors, diabetes specialists, and they told me The Girl was in the final stages of liver failure. The hospital social worker would be called; the palliative team would be called. I’d have support, I’d have help – whatever I needed.

I burst into tears.

I called my sister, Chookie-Lou. She burst into tears. I called the Chukker-boy. I told him The Girl was in “the final stages of liver failure….” which was then followed by a series of muffled squeaks because I dissolved into a flood of tears. He said he was leaving right now. I hit redial and called him back and told him we weren’t talking last rites here, that she wasn’t passing over right this minute. He said he’d come anyway.

We sat by her bed. We met with the social worker. I told her I wanted The Girl to come home. The Girl would not want to spend her last days in a hospital. The Chukker-boy told us The Girl would probably bounce back. We gave him grim smiles and nodded like we understood he was trying to see the bright side. Like he was deluded but we’d humor him. The social worker told me I’d have support, I’d have equipment; everything I needed was at my disposal. So I went home.

I called The Girl’s art teacher/respite carer, told her the news. She burst into tears. I called her program manager, told her. A succession of calls went out causing a wave of people all over the North Shore to burst into tears.

I returned Saturday morning. The Girl was sitting up in bed. I helped shower and dress her. She wished the nurse Merry Christmas. I told her Christmas was over. She remained hopeful.

She requested her Playstation. She requested a movie and a haircut, then polished off an enormous meal. She watched The Smurfs and nodded off for twenty minutes. Frankly, she was looking pretty chirpy for someone at Death’s door.

She ate her afternoon tea, colored in three coloring books, and demanded Pokemon. At four o’clock, I kissed her goodbye, told her I missed her. She gave me a cursory wave and carried on coloring.

By the time I got there on Sunday morning, she’d eaten breakfast and had morning tea, gulped back a cup of tea and wished the entire ward staff Merry Christmas. I told her it still wasn’t Christmas. She still remained hopeful and ate lasagne for lunch. I asked her what she wanted – what she needed. She said, “More lasagne.” I told her there wasn’t any more. A nurse came and took blood. The Girl wished her Merry Christmas. I reiterated to her that Christmas was done and over, that her birthday was next in line. I told her visitors would come today. She queried the present situation. I told her not to get her hopes up.

When I left tonight, she was sitting up coloring her Dora the Explorer book and looking slightly miffed because the expected presents never materialized and I had confiscated the computer which, by rights, should be hers to watch a Smurf DVD on. Boredom is threatening. Hospital life is suddenly not looking quite so terrific. She wants her Playstation. She wants that haircut and to go to the video store.

Tomorrow will be interesting. The palliative team, the diabetes team, the ward staff and doctors will converge to plan the way forward. The Girl will probably wish them Merry Christmas and shock the hell out of them. She looks better than I do. I’ll tell them not to be too surprised, that The Girl has had more lives than a bagful of bloody cats. Then I’ll take her home.

I know this won’t last forever. I know that one day, probably in the not-too-distant future, we will need the palliative team and the social worker and all that support so I can keep her at home. We’ll be calling people in succession and causing them to burst into tears. I’ll be preparing myself for the worst, for when The Girl is slipping away from us. I don’t think today is that day. I think this has been a dry run. But it’s made me realize some things:

  • It’s made me realize just how much I’ll miss her
  • It’s made me see how much my life will change
  • It’s given me a glimpse of how much she brings to my life and those around her
  • It’s brought me to appreciate the time I have left with her
  • It’s reinforced for me what a wonderful, special and amazing little person she is
  • It’s made me realize that the time I’ve spent with her has been worth every minute; that my life has been enriched by her; that, given the choice, I wouldn’t have done things differently
  • It’s made me see once again just how much I love her

And who could want more?

 

 

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