Day -1: Rest Day, but the Heart Missed the Memo!

Today was suppose to a Rest Day for Sean, but someone forgot to tell Sean's heart.

For no reason, Sean became tachycardic early in the afternoon, which sent the doctors and nurses into a bit of a flurry. Nothing major was scheduled to happen today, but during a routine set of obs, our nurse Tina noticed Sean's heart rate was a bit elevated, and she thought she saw Sean having some difficulty breathing as well. Tina took Sean's temperature, but that seemed normal, so she continued with the regular obs, waiting to see if Sean's condition would change over the course of the afternoon.

Outwardly, there was nothing markedly different about Sean. He was still active and playful and happy, and he looked and seemed completely fine. It was only when he was hooked up to the heart rate monitor that Tina noticed anything different / not quite right about Sean. To be on the safe side, Tina placed a call to the transplant team.

The transplant team was still around, so they all came by and had a look at Sean. Earlier today, during rounds, we finally met Dr Tracey O'Brien, who we were suppose to have met weeks ago. When Sean became tachycardic, she and Adam and Andy and Cris were all called to come and examine Sean. Everyone agreed that Sean looked perfectly fine, so they asked Tina to continue monitoring him for the rest of the afternoon to see if Sean would improve.

There was enough cause for concern that an EKG was ordered. We were not told the results, but it must not have showed anything for too great a concern, for we were told we were allowed to pull the electrodes off Sean's wrists and ankles.

Unfortunately, Sean did not show any signs of improvement, so a ward doctor was called to come and check on Sean just before dinner at around 5.30pm. Louis checked Sean from head to toe, and as he too was unable to find anything wrong, and prescribed some Panadol for Sean, which he took without any problems. By the time Sean fell asleep at 8pm, his heart rate was back to normal.

The day started with so much promise. When Sean woke just before 7am, he was happy to sing to himself for a little while until he heard me wake up. When I sat up in my bed, he too sat up in his cot, and was all smiles and lively. I went to the cot and lowered the side, and was rewarded with the biggest cuddle from my bald little guy with the spiky stubble on his head. We stood and cuddled for a while, with Sean patting my arm gently as if to comfort me. Too too cute.

The morning activities were normal. Sean ate his breakfast - he took his time, but he ate a decent amount. The medical team stopped by to check him over, and Professor Marshall wished us the best of luck as he handed over to Dr O'Brien, who would be looking after us this week. I noted wryly that my worries and concerns related to the change in personnel for the "big talk" were even more unfounded, as we ended up with the Head of the Stem Cell Transplant Programme (Dr O'Brien) looking after us during the week of the transplant, and her boss, the Head of the Centre for Cancer and Blood Disorders (Professor Marshall) looking after us during the chemotherapy.

Sean grew tired around 10am and promptly fell asleep while drinking a bottle of formula. We thought he would have a long nap, but 40 minutes later, he was up and about again. So we gave him a bit of lunch, and Jonathan and I took turns playing with Sean, or giving him cuddles as he seemed a bit clingier today, for the rest of the afternoon.

We met Verena the music therapist today. Verena and Kym job shared the music therapist position, with Verena working Monday to Wednesday and Kym working Thursday and Friday. Verena played mainly original music, and Sean was happy to bang on the drums and strum the guitar again. Verena promised to drop by tomorrow before the stem cells transplant to play with Sean again. After she left, Jonathan and I both agreed that as good as they both were, we liked Kym and her style better than Verena.

I finally finished a project that I'd been meaning to complete for a long time - a hanging mobile for Sean. During our last stay in hospital when Sean was having the central line surgically inserted, Sean was really taken with the hanging mobile that dangled over his cot in the hospital room. Since then, I'd wanted to make one to hang over Sean's cot during this long stay. Jonathan and I went shopping the day Sean was discharged from the central line insertion to buy the various bits and pieces to make the mobile. I had planned to make it before we left home, but alas, time got away from me and we ended up bringing the things into the hospital.

I had started on the project on Day -5, and my elaborate and over-the-top design saw me spend hours and hours sewing the sequins on to the foam star pieces, and threading the fluffy and shiny pom poms on to fishing lines and attaching them to the foam star pieces. I really wanted to finish the project today so it was up and twinkling and dancing over Sean's cot, so I spent a couple of hours putting the finishing touches on the world's most over-engineered hanging mobile. It was all worth it in the end - Sean loved the mobile and kept pointing at it and beaming his big happy smile.

The hanging mobile looked awesome set against the laser star projector in our darkened room. I loved how the laser lights sparkled off the ceiling and on to the sequins on the foam stars on the mobile, and the sequins in turn sparkled and twinkled in the dark. Yes, I was pretty pleased with myself!

Without an afternoon nap, Sean was worn out and ready to crash by 7.30pm. A quick bath and a bottle saw him drift off just before 8pm. Sean only drank half of the bottle before refusing the rest, but we weren't too fussed as our lovely night nurse Emma (who'd looked after us during the day early last week) was going to give him an overnight feed of PediaSure at 40mL per hour. Jonathan was home by 8.40pm, and I hope he will have a good night's sleep tonight.

I am wide awake. Totally exhausted but my brain won't stop. I am worried about tomorrow, and scared. Over this past week, I've tried my very best to be brave, and not cry or show how scared I am. I said I tried, but I don't think I did that well. I've cried every day, a number of times a day. I'd be in the middle of saying something and I'd choke up and tears would well in my eyes. And once the tears spill over, there was no stopping them. The tears usually lasted only a few seconds, a minute at most, but I never know when I would get teary. The waterworks were unpredictable.

I really hope I can get some sleep tonight. I need to be on top of my game tomorrow. I'm nowhere near ready, but I said that about the chemotherapy too, and that was over in a blink of an eye. So, Day 0, ready or not, here we come!