Day +18: Restless In Randwick

Our worst day so far. And so different from yesterday too.

All day long, Sean needed someone to hold him. All day long, Sean cried if we put him down in the cot, even for a second. All day long, Sean was restless and irritable.

We weren't sure why Sean was acting the way he was. Maybe it was the switch of all medications from IV to oral (or down the NG tube). Maybe it was switching off the morphine. Maybe it was just one of those days. Any way you looked at it, Sean was unhappy. Very, very unhappy.

Dr Trahair didn't think there was anything wrong with Sean when he did rounds this morning. I was tired from the trauma of the night before, and was still in bed when he and Richard arrived. The only thing that was to be changed today was the tube feeding, which was to be graded up to 60mL per hour for 16 hours. It would be nice for Sean to have a good break from the constant tube feeding.

With Sean being so irritable throughout the day, and at various points of the day, Sean's cries sounded like he was in pain. Emma, our day nurse, thought some Panadol might help alleviate some of that pain, but it didn't seem to have any effect on Sean. It was decided around 3.30pm that Sean would be given some oxycodone to see if his temperament would improve. Oxycodone was a stronger pain reliever than Panadol, and it had the desired effect. Sean was much happier within minutes of being given the drug, and for the first time all day long, he was happy to sit in his cot and play by himself.

I was out when the decision to give Sean some oxycodone was made. I was present earlier when Emma was talking about giving Sean some oxycodone, but it had to be prescribed by a doctor, so we waited and waited and waited. When it didn't appear, I went out for my walk and a massage. Jonathan agreed to the pain relief because we both felt Sean needed it.

Until Sean was given the oxycodone, Jonathan and I took turns holding him. For most of the day, Sean just couldn't seem to get comfortable. Jonathan wanted to have a shoulder massage and went out around lunch time to get his own pain relief. He went to the massage shop in the Royal Randwick Shopping Centre, the same place I went to for my massage last weekend. In the afternoon, I switched places with Jonathan and enjoyed a lovely foot massage.

By the time I returned to the hospital, Sean was in a much better mood and was happily playing by himself in the cot. The good mood lasted for the rest of the day, and Sean enjoyed his bath and went off to sleep at the very reasonable hour of 8.30pm. Having spent most of the day registering high blood pressure and high heart rates, the nursing staff thought he would spike a fever too, but thankfully, everything settled down once Sean was asleep.

Unfortunately, by 9pm, the oxycodone had worn off and Sean woke crying, as if in pain again. Nothing could get him to resettle and sleep, and the nurses got a doctor to prescribe more oxycodone, which seemed to work. For about an hour.

Irish Jo was looking after us, and suggested that Sean may have been suffering from morphine withdrawal. After the morphine was turned off late yesterday afternoon, Sean's mood had slowly declined, and while Sean dozed, he would jerk and shudder so much he would wake himself. And Sean didn't really sleep so much as he dozed. Sean didn't seem to fall into a deep sleep - the sleeps were so shallow that it really didn't take much to wake him. In Irish Jo's opinion, all of this pointed to Sean possibly suffering from morphine withdrawal.

Another doctor was paged to review Sean, to see if he was in fact in pain, and if Sean should go back on a little bit of morphine to help him deal with the pain. I had just resettled Sean - he was quiet and looked like he was going to fall asleep again, and when she walked in, she woke him up and he became quite upset. The doctor very loudly told me, after I expressed my dismay, that she needed to examine him while he was awake in order to allow the morphine to be given. Fortunately, she was quick in reviewing Sean, and agreed to put Sean back on morphine overnight.

After waking at 9pm, Sean tried and tried and tried his best to go back to sleep, needing a few cuddles every now and again, but try as he might, he was still awake, and even now, he's lying still in his cot, but he is wide awake and wanting to play.

Our cute little man showed me tonight that he understood what "sleepy time" meant. Lying in his bed for hours, he'd look at me and smile, and say "gah", and trying to instigate play. I'd smile back, and say to him "sleepy time", and he'd squeeze his eyes shut and try to go to sleep. Such a beautiful boy. If only he would go to sleep for real, then we would all be very happy.

Nearly midnight, and Sean is still awake. I have no idea what time he's going to pass out tonight. All I know is I'm very tired and I really wish Sean would sleep. I have a feeling it's going to be a horrible, horrendous night.