Day +6: The Difference Between Red & White

Today's post is brought to you by the colours red and white.

For most of us, we are immediately able to tell which colour is which. This is red, and this is white.

Unfortunately, even something as simple as telling the difference between red and white can be missed by some, especially when the person is tired and preoccupied.

During Sean's lines change late yesterday afternoon, Simone our day nurse somehow managed to connect the lines meant for Sean's white lumen to the red lumen, and vice versa. For those who have no idea what lumens are, these are the two lines that fork out of the main insertion in Sean's chest, as shown in the picture on this entry. One lumen has a white connector on the end, and the other has a red one. As I understand it, the main purpose of the white lumen is to deliver medications to Sean, including all the chemotherapy drugs and all the medicines to help manage the pain and assist Sean in his recovery. The purpose of the red lumen is for the doctors and nurses to draw blood for various tests, and when required, to deliver blood transfusions.

Most of the drugs that Sean needs can be administered through either the white lumen or the red lumen. However, there were one or two that should be administer only down the white lumen, as they are thick and sticky, more like a syrup than water. And cyclosporin, one of the immunosuppressant drugs Sean receives to prevent transplant rejection, is a bit thick and sticky.

This sticky drug now coats the inside of the red lumen. Any blood samples taken from the red lumen will be contaminated with cyclosporin. And it will take a couple of weeks of continuous flushing before the red lumen is decontaminated.

For want of a better phrase, Simone fucked up. And we could only shake our heads and roll our eyes.

This mistake was not a life threatening one. Sean wasn't given the wrong drugs. The medical team had not been negligent, nor had they failed to provide proper medical care. It was a mistake. And sometimes, these mistakes happened.

When Simone was changing Sean's lines yesterday afternoon, she was coming to the end of her shift. There were only 2 hours of work left, and I knew she had been out the night before, celebrating her sister's birthday. None of these were excuses for her mistake, but these were merely my reasoning for this huge oversight.

The mistake was noticed this morning, when our day nurse Kate was trying to work out which line was connected to which pump. I'd had a bad night of sleep due to the incredibly noisy nurse from last night, who woke Sean not once, not twice, but THREE TIMES. Each time Sean woke, he needed a lot of comforting to settle down again, and after settling him for the third time, I was ready to throw a brick at Clare's head. Too tired to come up with diplomatic words, I kept my outrage to myself until I saw Kate in the morning.

Clare was extra noisy all night long. She banged open the door, and banged shut the door. For some reason, every time she touched Sean to check his temperature, or measure his blood pressure, Sean would wake. Up to now, Sean had not had any problems with the other night nurses taking his obs. Not only did Clare's touch wake Sean, she also pulled up Sean's metal cot railings without trying to prevent the catches clashing loudly, loud enough to startle and re-wake Sean after I'd settled him.

By the time Jonathan arrived this morning, I was in tears. I told him that if Clare was on again tonight, I just could not face another night of her being noisy. My whinging was heard by more people - I made a mention of the noisiness to Laura, and again to the medical team when they were doing rounds, and to anyone else who cared to listen.

Being so tired, there really wasn't anything I could do but shake my head and roll my eyes when we found out about Simone's mistake.

The consequence of the incorrectly connected lumens and the cyclosporin being given down the red lumen was that Sean would have to have blood drawn from his arm for the next couple of weeks. The doctors checked Sean's cyclosporin levels every Monday and Thursday, so the medical team will arrange a blood sister to come to our room at 8am on those mornings to draw blood. Poor Sean. We didn't think he would have to turn into a pin cushion after the central line was put in, but yet, here we are, faced with blood being drawn from his arm twice a week for the next couple of weeks.

As if the broken night's sleep gave him boundless energy, Sean refused to sleep a wink during the day. From when he woke at 7.20pm, to when he crashed at 8pm, the little man was go, go, go!

Sean was still quite unsettled today, and after reviewing him, the medical team decided to increase Sean's pain relief. The dosage of morphine was increased, and it seemed to make Sean a little bit less grizzly. The medical team also decided to increase Sean's tube feeding, from 16 hours at 40mL per hour, to 20 hours at 40mL per hour. The little man was going to be hooked up to the milk pump from 12 noon to 8am, every day for the next little while. This was not a bad thing, as Sean was slowly but surely losing his appetite, and he needed to maintain his weight for the bumpy road ahead.

With Sean not sleeping in the afternoon, we decided to Skype with Jonathan's parents, so they could see how Sean was doing. It wasn't a long call, as Sean wanted to play with the mobile phone and was not pleased when we didn't give in to his demands. The call was long enough for us to update them with all our latest news, and when Sean wasn't grabbing at the phone, he was waving to Grandma and Grandpa, which seemed to please them. Mum had altered another batch of suits for Sean and popped them in the mail, so they should arrive at home any day now. Thanks so much, Mum!

Mum and Dad were pleased to see us and talk to us, as they wanted to know what we were going through and how we were coping. We will try to Skype more often, but with Sean's gradual decline to the "sick" part of his treatment, we may have to time the calls with Sean's moods.

Based on what we'd seen and heard from our medical team, confirming to us that Sean's white cell count was at zero, and he was definitely showing signs of mucositis developing, Sean was starting to slide down that slippery dip to being quite sick. Over the coming days and weeks, the team will manage Sean's pain and monitor him closely to ensure everything was tracking along well. Sean had been tachycardic and febrile and hypertensive before (though thankfully not all at once), so the team knew what to look for and how best to treat Sean when he became tachycardic or febrile or hypertensive.

Late in the afternoon, Prue the nursing unit manager dropped by to have a chat about Clare and her noisy way of working. I reassured Prue that Clare's level of care for Sean was never my quibble - my gripe was how noisy she was when she was in the room and only wished was that she would be quieter in future. It was all about the little details, like taking that extra couple of seconds to make sure the metal railing didn't clash with the catches when she pulled the railing up, or to close the door a little bit more gently behind her. A few seconds here and there to ensure Sean did not wake up was all that was needed.

As it was, Clare was assigned to us again tonight, because she was the most senior and experienced of all the nurses on night shift, and the transplant patients were always given the most senior staff to look after them. Senior or not, it was all about that extra little bit of care and sensitivity, and I couldn't care less who looked after Sean, as long as they did their job properly, with care and sensitivity. Clare needs to be quiet tonight, or I will go all Momma Bear on her and ban her from coming anywhere near my baby.

Clare has been in the room tonight, doing the things she needed to do, and she has been quieter tonight than last night. I am told that Clare had been spoken to by Prue and Irish Jo, who was the team leader earlier today and responsible for overseeing the handover from day shift to night shift. So far, so good. I really hope she keeps being quiet. My little man needs his rest!