Day +7: The Good Drugs Are Coming!

We knew it would happen, sooner or later. In Sean's case, it was happening a little bit later than expected.

The aches and pains were starting to rear their ugly little heads, and Sean was feeling more and more uncomfortable as the days passed. Sean wasn't completely happy when he woke this morning, and as the day wore on, he became more and more grizzly.

Every time he got upset, it took us around 10 minutes to calm him down again. Any sooner, and he whipped himself up into a frenzy again. Holding him and patting his back and bottom were the only things that soothed his frazzled nerves.

The usually outgoing and sociable little boy that the nurses knew and loved decided not to come out and play today. Emma, our day nurse, was teaching a new staff member Danielle today, and had obviously told Danielle what a lovely little boy Sean was, because when Danielle walked in the room, I could see on her face that she was looking forward to meeting a fun little boy.

Someone just forgot to tell Sean that we want a fun little boy today. Instead, he gave us grouchy and grumpy.

Emma had to do Sean's obs all day long, and every time she came anywhere near Sean, Sean arched his back and let out a painful screech. Even if Emma was only looking at the bungs on Sean's central line and not actually pushing anything medication through, Sean would still react as if someone was about to inject searing hot lava down his lines.

When the team did the morning rounds, they didn't note anything out of the ordinary for Sean. He was tracking along nicely, and progressing as they had predicted and expected. So far, so good. We liked hearing these words come out of the doctor's mouth. As the day wore on, it became quite evident that Sean wasn't managing well, and our lead transplant consultant for the week, Dr Draga Barbaric came by to review Sean late in the day.

Dr Barbaric gave us a couple of options: increase the morphine and see how Sean copes with the pain, or start Sean on some ketamine.

Special K! Wow, Sean, you are getting all the good drugs. First morphine, now Special K. What next? Ice?

The dosage of ketamine that Sean would be getting would be so small that it would only relieve his pain. Ketamine was widely used as a paediatric anaesthesia, and most kids react really well to ketamine. There were some rare side effects, such as hypertension and hallucinations, but Dr Barbaric and Laura both said these side effects were rare. The catch with ketamine was it would require a special line of its own - a cannula in Sean's leg, so the nurses could administer the drug subcutaneously (under the skin).

The most upsetting part wasn't that Sean was going to have to deal with another new medication in his system. The most upsetting part for me was the fact that Sean would have another line attached to him, to get tangled up with all the other lines that were already connected to him. It was hard enough looking after the current and existing lines; one more line, especially one that was on yet another different part of Sean's body, was just too much for me to handle.

Currently, Sean has a nasogastric tube down his nose and into his stomach to feed him milk. This tube is stuck to Sean's face, and the end on the outside snakes around Sean's back and held in place between shoulder blades by medical tape. Sean is connected to the milk pump now for 20 hours a day. Then there is the mass of tangled lines and bungs connected to Sean's central line. All of these are connected to the various pumps 24/7. Due to the medications that Sean is on, he requires round-the-clock monitoring, so on his foot, a monitor probe is wrapped around his big toe, and this is connected to the monitor.

On any given day, Sean would find a way to get all the lines completely tangled, to the point where some of the lines were kinked and the pump's alarm would sound every few minutes. Because he is still so active, and is walking around the cot a lot, he would step over the bunch of lines connected to the central line, and would then turn clockwise until the milk feed line was wrapped around his stomach. Any attempt to get him to turn anti-clockwise was met with tantrums. Screaming, inconsolable tantrums.

Every time, it took Jonathan and me at least 15 minutes, along with a great deal of coaxing to untangle the lines. We would sit Sean in a small bucket, and one person would turn the bucket while the other held the lines up and away from Sean. Sometimes, it was more like a jigsaw puzzle to try and work out why a certain line was now twisted around another line that was earlier completely unrelated.

To hear that the doctors may need to add another line to Sean's body was not the best thing we could have been told.

Jonathan had a slightly different concern to me. He didn't want the cannula in either, and reasoned that it was another opening on Sean that could be avoided for now. The less openings on Sean's body, the better for him as the flip side would see any and all airborne bugs and germs having yet another opening on Sean's body to infect, or try to get into Sean's body to ravage the inside.

Laura showed us the cannula, and even though it was really only a small thing, I had a few tears over the thought of this new contraption in Sean's leg. After talking with her some more, Jonathan and I decided that we should wait and see how Sean would cope with the new increased levels of morphine. If Sean seemed to be coping, then all was great and we would hold off on starting the ketamine. If Sean became more and more grizzly, then Sean would be getting a new attachment in his leg.

The small increase of the morphine helped. Sean was much more settled after the pump was set to the higher dosage. The little man is happily sleeping. Meanwhile, I am wide awake and totally wired, both from worry and from taking a small sip of Jonathan's energy drink at 5pm. Who knew that one little sip could give me such a buzz all these hours later?!?! I hope I start to feel tired soon - the body is well past tired, but the mind is still ticking over. I wonder if reading will help knock me out... Hello, gossip mags, let's see if reading all about the KarTRASHians will get me off to the land of nods.