Day +3: Hello, Morphine!

Sean got his first taste of morphine today. And he liked it.

At least it seemed to make him a bit less grizzly and a bit happier with everything that was going on around him.

After 2 days of being nauseated and some bouts of vomiting, the medical team decided to give Sean some morphine to help with the pain. It was only a very small amount trickling in the background, but it was just enough to take the edge off all the aches and pains Sean might have been suffering but was not able to vocalise to us.

The medical team also prescribed more anti-nausea medications to help combat the vomiting. Sean was feeling so nauseated that he wasn't even able to tolerate getting some of his oral medications. So the medical team decided that as much as possible, the oral medications would be switched to being administered intravenously, and where they must be taken orally and when Sean wasn't up to swallowing the medications any more, then those medications would be pushed down his nasogastric tube.

With Sean's interest in food showing signs of decline, and certainly with his intake of food on the slide, the medical team decided to increase the tube feed of PediaSure from 10 hours at 40mL per hour, to 16 hours at 40mL per hour. This meant Sean would be hooked up to the milk pump from 5pm to 8am every day. Great. One more line to worry about getting tangled with all the others.

The great thing about this increased tube feeding was we, as in Jonathan and I, didn't have to worry or become too stressed about Sean's food intake. We were encouraged by the medical team, and especially by Heidi the dietitian, to continue offering food to Sean, and if he was happy to take the food, then that was great. However, we didn't need to pressure Sean into eating - if he wanted something in his mouth, and/or he was happy enough to eat whatever we offered him, then that was enough for now. On the one hand, it was important that Sean did not forget the texture and taste of foods, and on the other hand, it was also important that Sean didn't develop any aversions to food. The way he was feeling now, if we kept pushing him to eat, and he threw up every time, he may associate food with vomiting, and that was definitely something everyone wanted to avoid.

Having said all that, Sean was pretty great with food today. He ate a reasonable amount of food and drank a few bottles of formula as well, all without vomiting. Whatever cocktail of drugs he was on now was certainly working for him.

Speaking of food, we "discovered" The Spot today. I knew the area, having worked for 14 months at the University of New South Wales (which is just down the road from the hospital) some years ago, but it had been a while since I'd been in Randwick and I'd forgotten how to get there. Jonathan had never spent time in Randwick, so he went for a walk using the directions given by Lisa our day nurse, to see what restaurants and food outlets were available at The Spot.

Jonathan's adventures took him past Arthur's Pizza, and he called to ask if I felt like having pizza for dinner. I did, and left the ordering to Jonathan. He came back with 3 pizzas - a Supreme pizza, a Parma pizza (which had prosciutto, roma tomato, parmesan cheese and baby rocket), and a Garlic pizza as well. While he was waiting for the pizzas to be made, Jonathan went and collected a bunch of takeaway menus from the other restaurants to keep in our room for future reference. The pizzas were delicious! On their website, Arthur's Pizza claimed they had the best pizzas in Australia. While the pizzas were good, in our humble opinion, we've had better.

The day wasn't without its moments. Around mid-afternoon, Lisa and I had a chat about Sean, and she asked if he was our only child. I said "Yes, and quite possibly our only child ever", and she told me to never say never, especially if we wanted more kids. Lisa wasn't completely across Sean's disease - she knew he was a transplant kid, but didn't know or realise that his disease was genetic. So when she told me that we could definitely have more kids, I started crying, and through my sobs, I explained Sean's disease to her. I felt so awful making her feel bad about bringing up the topic of kids, but, well, since she did instigate the conversation, she had to deal with the fallout.

It had been a couple of weeks since I'd thought about adding to our family. It wasn't something that we could think about for the time being, and after the "big talk", it became evident that if we were to consider having another baby, we needed to put those plans on hold until a year after Sean's transplant. It was also made clearer to us that the only way to guarantee a baby without the mutant gene was to go through genetic screening and IVF, both of which were costly exercises. And then, of course, there was my age to consider. I am turning the big 4-0 at the end of this year, and my age could become another obstacle.

I would dearly love to have another baby. If I could be guaranteed a perfectly healthy baby without the mutant gene, I'd get pregnant tomorrow. But Project Sibling will just have to wait. We need our little man to be cured and given the all clear before we can look into having Baby #2.

Lisa apologised profusely for some time after, telling me she hadn't meant to upset me and hadn't meant to be insensitive by bringing up an obviously painful subject. I told her that she meant no harm, and I wasn't upset because she made me talk about it. Very simple, the subject itself was a painful one, and while I was willing to talk about it, tears were guaranteed to spill.

Jonathan was out at the shops when Lisa and I had this chat, and when he came back, I asked him if he would be agreeable to us approaching Megan the social worker about finding a genetic counsellor to talk to us about the possibility of having another baby. Jonathan agreed - there was no harm talking to someone, and in light of everything, it may be some time before they could find someone to talk to us.

Our second moment of the day came just after Jonathan left for the night. Sean was quite tired, and was lying quietly in his bed with belly full of formula and happily drifting off to sleep. I was recording Sean's daily stats with my back turned to the cot, when all of a sudden, Sean let out a very shrill screech, followed by a prolonged "I'm in pain" cry. I turned to see what was going on, and immediately spotted the problem - Sean had pulled off the tape pinning his nasogastric tube to his face, and consequently, most of the tube was now out of position.

With English Jo looking after us (the same nurse from last night who was noisy), I buzzed her into our room to deal with the dislodged tube. Jo called another nurse, Joel to come in and help, as I told her that she would definitely need another set of hands besides hers and mine to hold Sean down and to reinsert the tube. Jo and Joel were glad I warned them, as Sean fought against being held down, and even more against the tube being reinserted. Jo took 2 attempts to get the tube in place - oh, how we wish Tina was working tonight! Tina would have had the tube down before the tears fell from Sean's eyes.

My poor little man is now completely spent. After about 10 minutes of cuddles, Sean finally fell asleep in my arms. I held him for another 10 minutes before putting him into the cot. I'm now wide awake and hope I will eventually fall asleep. Maybe I'll switch my Facebook profile page over to this new Timeline layout tonight. That should keep me busy for a while, locking down my account and upgrading all the security again.