Day +37: Mother Knows Best

I really wish medical professionals would listen to me.

I mean, who am I, really? I'm not a doctor, nor am I a nurse, but when it comes to Sean, I am his full time carer, and I know best.

And as anyone in their right minds would tell you, Mother ALWAYS knows best.

I have looked after this little boy for 16 months. Every day. For 16 months. You think I'd know something about my own son. What he likes. What he doesn't like. What he will put up with. And what will upset him to the point where he either throws every monitoring device off, or he throws up.

I've already been through hell trying to get a doctor to agree with my suspicions that there was something wrong with Sean. Three months of hounding, and it took a chance meeting with a paediatric nurse to convince our paediatrician to jump to attention. And what happened next was the start of how we got to where we are today.

Since 5 January, I have been on a steep learning curve, finding out all about Sean's disease, getting to know all of his new medications, remembering what to give him when and how much, and why Sean had to have what at when and how much. I never applied for my new job as a full time carer of a sick little boy, but here I was, living and breathing proof that I can do anything if I put my mind to it, or if I have no choice but to get on with it.

Every person is an individual and has his own idiosyncrasies. That's what makes us all unique. Every job has its own protocols and procedures, and in the medical profession, those protocols and procedures are quite strict. And when you work in paediatrics, those protocols and procedures are even more strict. However, I am a firm believer that there are always a number of ways to get the same job done, within the protocols set by the job.

Working with children, you have to be a bit creative and sympathetic to obtain certain measurements for the charts. You have to look at the situation and make a call as to how you go about doing your job, without upsetting the child and hence the child's carer. And if the child's carer is giving you helpful hints on the best way to get the numbers for the charts, then use those helpful hints. Ignoring the carer's helpful hints will definitely upset the carer more.

If I tell you that you should try and get Sean's obs done separately, as in take his temperature, then take his blood pressure, then listen to his chest, then monitor his oxygen saturation levels, one procedure after another, then you should do the obs separately. If I tell you that the electronic blood pressure machine will not work on Sean, then you should resist using the machine and go and look for the manual machine. If I tell you that the monitor that measures oxygen saturation levels would only work if it was clipped on to Sean's thumb, then you should clip it on to Sean's thumb. If I tell you that Sean needs a long piece of tape over his nose to hold his NG tube to his face, then you should cut a strip long enough to go over Sean's nose.

What you shouldn't do is ignore me. What you shouldn't do is roll your eyes when I give you another helpful hint to make your job easier. What you really shouldn't do is plough on ahead with your way of doing things, and upset your patient and his mother at the same time.

Hmm... so you couldn't get an accurate reading on Sean's temperature, nor blood pressure, nor were you able to hear his breathing very well. Oh... and you weren't able to get any sort of reading on the oxygen saturations machine. And wait... that tape on Sean's face that only went half way over Sean's nose; it has started peeling off, 2 minutes after you put it on.

So, no, please don't listen to me. Please ignore me, because I'm not a doctor, nor am I a nurse. I am merely Sean's full time carer who looks after him 24/7. I've seen it all and done it all, but please, don't bother taking my advice. I apparently know nothing.

We had quite possibly the most obstinate nurse today. We met Luke on our second Clinic day, when he flushed Sean's central line while I was out moving the car. As a rule, I prefer to be in the room whenever a medical professional performs a procedure on Sean, no matter how minor the procedure. Just as the ophthalmologist who woke Sean from his nap to put drops in his eyes while I was out of the room - she walked away with a piece of my mind. Luke had already left a not-so-great impression on me, and after today, I almost went to the Nursing Unit Manager to give her a piece of my mind about Luke.

When I saw Luke put the blood pressure cuff from the electronic blood pressure machine, I told him that it may not work, based on past experiences. Luke pushed on and clamped the cuff on Sean, and popped the thermometer under Sean's arm. I told him that it would be better if Luke did one thing after the other, as Sean will get upset with too many things happening at once, and he ignored me and pushed on. What happened next was exactly what I thought would happen. Sean got upset, the thermometer showed a much higher temperature than what it should have been, and Sean's blood pressure was also a bit higher than it should have been. Luke had to redo Sean's blood pressure using the electronic blood pressure machine 4 or 5 times, and even then, he still wasn't able to get an accurate reading. Sean got more and more upset with the cuff constantly squeezing his arm, and Luke had to abandon the electronic machine and went looking for the manual pump.

The little machine that measures oxygen saturation levels didn't work on Sean's index finger, which Luke insisted on clipping to. Guess what? It worked on Sean's thumb.

When Luke came back with the manual blood pressure machine, he started wiping down the yellow cuff, which I knew was way too big for Sean. After being ignored, I was through talking directly to him, so I directed my statement to Sean, saying that the yellow cuff was something new and we normally had the black cuff. Luke rolled his eyes and let out an audible sigh before going out of the room to get a black blood pressure cuff.

It took Luke 4 more attempts before he finally finished doing Sean's obs. If only he had just listened to me in the first place.

It was so painful dealing with Luke. I asked him to page Heidi the dietitian and Megan our social worker, and he forgot to do so for a couple of hours. I asked him specifically to give me a 10mL syringe and a 50mL syringe, and he brought me 3 syringes: 10mL, 20mL and 30mL. No, idiot, I wanted 2 syringes, not 3 to make up to the total volume of the two syringes I asked for!!!

One of the things we needed the nurses to do for us today was to reinsert an NG tube into Sean. This morning, Sean had accidentally pulled out the NG tube that had served him so well for the past month, and we needed the tube reinserted as soon as possible so I could give Sean his cyclosporin. I asked for the tube to be inserted at 8.30am. Because Luke took so long to get all the obs done, he wasn't able to get someone to help him until 10.30am. I was suppose to give Sean his medication at 8am, so I was more than ropeable that I wasn't able to push the drugs down the tube until much later in the morning.

I had an issue with the tube that Luke selected as well. It was a LOT thinner than the previous one, and I made a mention of it. I was completely ignored, and Luke kept inserting the tube. Sean was so hysterically upset by this point that I just let Luke continue what he was doing, just so Sean wasn't being held down for longer than needed.

Sean fell asleep after this latest trauma, and Luke popped his head into the room and asked to change Sean's dressing on his central line. There was no way in the world I would allow Luke to wake Sean, so I told him to come back later. He did, 15 minutes later, letting me know that he had to change the dressing soon because we needed to vacate the room by a certain time. I told him to leave, and I'll let him know when Sean was awake. Piss off, idiot.

Dr Trahair wasn't able to see us today, and in his place, we saw Professor Cohn, who readily agreed to dropping the Ursodeoxycholic Acid from Sean's medication regime. Yay! One down, more to go. Professor Cohn was happy with Sean's progress, and left Sean to sleep. The only thing we needed to get done was to have the dressing changed, and I waited and read while Sean napped.

When Sean woke, he somehow managed to wrap the connectors at the end of the NG tube around the bars of the cot, and ripped the tube clean out of his nose. I notified Luke that not only was Sean awake, he would need another NG tube. Luke started at me about how I should have been more careful and not let Sean pull the tube out, but I steadfastly pointed out that he really should have given me a piece of tape to stick the connectors to Sean's back, which would have prevented the connectors from being wrapped around anything. So, not only was he ignoring me, he was now berating me, for something that he should have done. Good going there, young man.

While changing Sean's dressing, Luke asked me if Sean's central lines had been flushed recently. I told him I didn't know, and his reply was along the lines of "well, you should know". No, dear, no one has told me how often Sean's lines should be flushed, and anyway, shouldn't this information be in Sean's file? Why don't you go look it up, instead of asking me? In his most patronising tone, Luke told me that Sean's lines should be flushed once a week, and that he was going to do the flush today, to align the task with the dressing change. Fine. Whatever. Talk to me like an idiot, and I will not respond.

Just when I thought relations between me and Luke could not get any frostier, just as we were packing to leave, Luke asked me if I had the blood test request form for next Tuesday. I told him that he had not given me anything, and he made some noises before telling me that I didn't need to hold the form anyway, and that all the forms would be in a central folder at the nurse's station. ARGH!!! So why did you bother asking me such a stupid question?!?!

I came THIS close to asking to speak to the Nursing Unit Manager, but time was getting on, and I needed to get Sean home to give him lunch. I just hope that we won't be dealing with Luke again next week.

It was 1.45pm by the time we left the ward, and we headed downstairs to pick up something from the pharmacy. It was closed for lunch, so we had to wait until 2pm for the window to be opened again. We should have just gone home, because the dosage that Sean should have been on conflicted with the dosage on the prescription. I was told to wait between 30 to 60 minutes, or come back another day. I chose to come back another day.

By the time we got home, I was exhausted from all the stupidness of the day. If we were to get Luke again next week, I will be asking for a different nurse. I don't think I can handle dealing with him again. This mother knows best, and if you don't like it or agree with it, then you will not be looking after my son.