Day +12: Happy Easter!

Happy Easter to you!

Even though we're in hospital, the Easter Bunny still found us. And boy, did the Easter Bunny find us!

We have been inundated with chocolate, in all shapes and sizes. There are the regular egg shaped ones, in small, medium and large. There are solid eggs, hollow eggs, eggs filled with chocolate goodies, and Cadbury Creme Eggs. And then there are the bunnies. Small, medium and large bunnies. Not just any bunnies. There's an itty bitty bunny. And a large Cadbury bunny. But best of all, there's a Lindt Chocolate Bunny, and a very special Ferrero Rocher Bunny. How are we going to get through all this chocolate???*

We were very blessed this year. Most of the Easter gifts we have received to date were gifts from the hospital. The hospital receives a lot of donations every year, and some of these wonderful gifts made their way into our room. Grace and Vinay and their family brought some Easter treats to us, as well as the Henrys when they came to visit yesterday. We love the gifts, but we're not sure if our waistlines or our butts will thank you as much.

We celebrated Easter Sunday by hitting another milestone - alopecia! Sean's hair started falling out today, which hit me harder than I'd anticipated. After making the choice to cut Sean's hair a couple of weeks ago, I thought I had reconciled myself to the fact that Sean would lose his hair as one of the side effects of chemotherapy. To see the very short strands of hair all over his white sheet was very confronting, and I burst into tears when Jonathan first pointed it out.

Since cutting Sean's hair on Day -3, the hair had grown back quite quickly, and Jonathan and I had talked about shaving Sean's head again. Now that the hair was falling out, we were definitely going to have to clip the hair even closer. Sean was very good with this hair cut - he wriggled at the start of it, but upon hearing the whirring sounds of the clippers, he sat perfectly still for Jonathan to give Sean's head a shave.

I was (and still am) very glad that we made the choice to cut Sean's hair. Even though it was confronting to see little shavings of hair all over the sheets today, I think it would have been worse if Sean's hair was longer - his hair would fall out in clumps, making his head look patchy, and that would have been more upsetting.

The doctors had been a bit worried about Sean's weight, given that he was on all sorts of medication as well as being fed round the clock, and he seemed to be retaining fluids which was making him puffy. The weight this morning was down from last night, but when we weighed him again in the afternoon, Sean was heavier than this morning, so the doctors increased the dosage of lasix in an effort to try and help his body get rid of the excess fluids.

It looked like Sean was going to refuse his nap again today, but he managed nearly 3 hours, which was fantastic. He was a little grizzly early on, which brought up the discussion of adding ketamine to the pain management. We were still reluctant to punch another hole in our son, so we asked the team to hold off for a little while longer, and we would reassess the situation on a day by day basis. Until such point as we felt Sean could no longer tolerate or cope with the pain using the current course of pain relief, we would not be asking for Sean to be fitted with another line.

Sean's runny nose was even runnier today, which was another cause for concern. Dr Barbaric wanted the nurses to suction some snot for testing, but being Easter Sunday, there was no one around to run those tests. Dr Barbaric said she would handover the task to Dr Trahair for next week.

Oh, yes, we finally get to see Dr Trahair for a whole week, 3 weeks after being admitted. It was finally his turn to be the lead consultant!

During rounds this morning, Dr Barbaric examined the inside of Sean's mouth, and found clear presentation of mucositis. She showed both Jonathan and me, and pointed the light to where the mucositis site was. Right up at the back of the mouth, there were clusters of little white ulcers, which looked very uncomfortable and sore. Now we knew why Sean sometimes started crying for no reason. Poor bubba. No wonder he had no appetite.

The time it took us to spot the mucositis in Sean's mouth was just a bit too long for Sean, as he became more and more upset with being held down for the examination. Once he was up again, his stomach did all the talking and let us know how unhappy he really was. Poor Jonathan - it'd been a while since he'd worn baby spit up.

Naomi continued to care for us today, and we found out that she was in the process of doing her chemotherapy accreditation. The accreditation was a long and involved process, and just like a learner driver had to fulfil 80 hours of driving before being able to do the driving test, Naomi had to clock up the times she completed certain procedures. She was being closely supervised by the more experienced nurse who held the accreditation, and Jonathan and I both encouraged her in her pursuit of professional development.

The afternoons had been funny times recently, in that Sean's moods and energy levels were unpredictable. Some days, he'd be happy to sit and watch TV while fiddling with something in his hands. Other days, he'd be happy only if he was sitting in our arms. And other days, he'd be racing around the cot like a mad man. Today, it was a combination of all of the above.

It was during the racing around the cot like a mad man phase that he tripped over the corner of the cot sheet he'd managed to pull out, and smashed his head into the cot rail. Having no white cells and being low on haemoglobin and platelets, the resulting bump was always going to look impressive. And it was. About 10 minutes later, Sean smashed his head again, only this time, he hit the other side of his head. Sean now sported a pair of contusions on his head, which looked very much like little horns were trying to push through his skull.

Moowahahahahaha ... and we shall call him Diablo.

Poor baby. Those bumps sure did look very painful. Over the next hour or so, the lumps grew smaller, but the haematomas grew darker in colour. At last glance, they were turning a rude shade of dark purple.

As if getting the "little horns" wasn't exciting enough, Sean managed to pull out his NG tube just before bath time. After talking to Naomi yesterday about replacing the tape covering the NG tube, Jonathan forgot to mention it again today, and Naomi had all but forgotten as well. With the NG tube out too far for the nurses to safely push back in to Sean, it was decided that a new tube was in order. Naomi, with the help of Emma and Jonathan and me, threaded the tube down Sean in one fluid motion. However, on "draw back", Naomi wasn't able to draw any fluids back into the syringe. To be on the safe side, a call was placed to get the portable x-ray up to our room and x-ray Sean's stomach to make sure the tube was in the right place.

While we waited, Sean had a lovely bath, and enjoyed some cuddles with Daddy, while taking a break from the continuous feeding for the first time in a week.

After a couple of late nights, Sean was asleep by 9.30pm. I was just finishing up this entry when the milk pump's alarm sounded to note there was a flow error. I tried to fix the problem - the same error message was displayed earlier, and I found the problem and fixed it, but after 4 attempts, I had to call in Shirley, our night nurse to review the machine. She deemed it was a problem with the position that the end of the NG tube was sitting in Sean's stomach, and she wanted to pull the tube out just a little bit to reposition the end of the NG tube. Of course, that meant pulling the tape off Sean's face, pulling the tube out just a little bit, and retaping the tube back to Sean's face.

I wasn't going to get an early night after all.

Fortunately, Sean went back to sleep quite quickly after the upset - he understandably screamed at being woken up by someone pulling tape off his little face. The problem may not have been the position of the tube in Sean's stomach alone - the line through which the milk ran down to the machine was faulty. Shirley took the line out of the machine, and on rethreading the line, it broke in two in her hand. It was just as well Sean went back to sleep without too much fuss. She probably should have checked the line first before reaching for my son's face.

Anyway, there are about 30 minutes of Easter Sunday left, so I will go to sleep now and dream about all that chocolate being part of a weight loss diet. Nom nom nom!

*The correct answer is, of course, one piece at a time.