Day -5: Day of the Fluids

Our little man is turning into a water balloon!

With so much fluid is going into him (to keep him hydrated through the chemotherapy, as well as to keep the drugs flushing through Sean's system, on top of which Sean was receiving approximately 400mL of PediaSure overnight), Sean was becoming a little bit bloated. And what goes in must come out, and this morning, Sean found himself lying in a very big wet patch. Even with the constant nappy changes, nothing was able to hold the amount of fluids coming out of the little man.

When the medical team came around to see us, Professor Marshall decided that Sean was being overloaded with fluids, and for the time being, cut the overnight feeds from the schedule. Sean was eating and drinking well enough on his own, and the medical team was happy to cut the overnight feed for now. Professor Marshall noted that Sean's face was looking a bit puffy, and told us that it was normal for people going through chemotherapy to be bloated. However, it was important to not put too much fluids into Sean, as this may cause damage to his kidneys, hence cutting the overnight feeds for a few days.

We were having to change Sean's nappies every 90 minutes or so on average, which meant the day felt like one long nappy change. It wasn't that we wanted to or were instructed to - it was because we had to, as Sean was peeing for Australia! We were given strict instructions to put on purple gloves before changing Sean's nappies - just as the nurses had to wear protective clothing to administer the chemotherapy drugs, we had to protect our hands from touching Sean's output while changing his nappies. Purple nitrile gloves are so sexy!

After breakfast, we Skyped with Jonathan's parents, who were holidaying in Timaru with Nana. It was lovely to see all of them, and we were able to show them how well Sean was still looking, and how active Sean was despite having endured a full day of chemotherapy so far. We gave them a virtual tour of our room, showed them all the lines that were connected to Sean, and all the machines that were connected to the lines. We asked Mum to make a few more suits for Sean, as Jonathan and I found that the only clothes suitable for Sean at present were Mum's awesome suits. Turned out Mum had already sneakily made a couple more suits and had sent them to us at home. Thanks Grandma!

It was really nice talking to Mum, Dad and Nana. We hoped it didn't upset them too much to see all the machines and lines connected to Sean. I know it was confronting for me and Jonathan when the nurses hooked up everything a couple of days ago.

Sean had a short nap around lunch time, and was wide awake when my parents came by with dinner for me and Jonathan. Mum was happy to be in the room with us, but Dad was scared of bringing germs into the room and at first didn't want to come in. After some gentle persuasion, he came within an arm's length of Sean, who was happy to see Gong Gong and Por Por. Dad and Mum didn't stay very long, but it was still nice to see them. Jonathan and I were getting very spoiled by the yummy dinners they were bringing us!

More of the same as yesterday were administered to Sean as part of his chemotherapy. The schedule continued with alemtuzumab, treosulfan and fludarabine, with various other "covers" being given all day long. We discovered that Phenergan really had no effect on Sean. For a drug that was suppose to make Sean sleepy, or at least a bit drowsy, it took 2 doses for him to go down for the count. And we weren't even sure if it was the Phenergan that made him sleepy, as Sean was also given Baby Panadol, maxolon, ondansetron, ursodeoxycholic acid, timentin and fluconazole throughout the day. Perhaps a combination of some or all of the above made him sleepy, or perhaps he was just tired from all the commotion. Either way, it took until just after 5pm for Sean to have his afternoon nap, and he stayed down until just before 7.30pm.

As if Sean knew the doctors had ordered a halt on the overnight feeds, he pulled out his nasogastric tube just before his afternoon nap. Sean was happily playing with his set of toy stethoscope, hooking the earpieces around his neck and putting the chestpiece all over his chest and belly, when he pulled stethoscope off his neck. One of the earpieces hooked around the NG tube, and lo and behold, Sean pulled the whole thing out of his nose. We won't be needing that for now.

Some of the side effects of chemotherapy reared their ugly heads today. The diarrhoea has started, as has the vomiting. Joy oh joy oh joy!

Penny came by for a visit, and brought us a gorgeous cheesecake for dessert. It was lovely to see Penny, who despite a long day of work was happy to drive to the hospital to spend time with us. We chatted for a while, and enjoyed some cheesecake, all the while Sean was busy playing in the cot and showing no signs of fatigue. We gave Sean a bath and Penny was treated to Sean's cheekiness, when he tried to submerge his face in the tiny bit of bath water in his bath.

It was well past 9pm by the time Penny left to head home. She had been holidays and needed to go to the supermarket to grab some groceries, and as it was getting late, we bade her farewell and a safe trip home. Jonathan stayed for while longer, to give Sean his night time bottle and to try and settle Sean to sleep.

As it got later and later, and Sean showed no signs of wanting to sleep, Jonathan went home to rest up, while I continued to try and get Sean to fall asleep.

It's now 11.15pm, and Sean is still trying to get up and play. There's no telling when he is likely to fall asleep, but I am hoping it is soon. I am struggling to stay awake! The nurses still need to change Sean's nappy every 2 hours throughout the night, so I don't know how much sleep either of us are going to get. Come on, little man, go to sleep!