Day +9: The Downward Slide To "Sick"

The "sick" part of this whole transplant programme was finally rearing its ugly head.

Sean needed a lot more comforting today than yesterday, and was sleeping a lot more today as well. While Sean was still happy to play with us and with all his toys, it was clear that he was feeling the aches and pains a bit more today than yesterday. He needed more comforting, and spent a large part of the day cuddling up to us. If we put him down when he wasn't ready to finish the cuddle, Sean would scream and cry.

The doctors were still impressed with how Sean was looking and acting, but they were giving us that "knowing" look as Sean continued to slip down this slippery dip towards the "sick" part of the recovery process. We kept receiving reassurances that it was perfectly normal for Sean to get sicker before he got better, and his body needed to start producing white cells before he would show signs of improvement. In the meantime, we could expect more days ahead where Sean will just want to be held all day long.

It was while Sean and I were having cuddles this afternoon that I suddenly lost it for a few minutes. I had a bit of a cry and felt a bit sorry for myself, as the enormity of the situation hit me again. Although I had been doing so well so far, reconciling the situation in my head and processing the details and planning (and keeping an eye on) what needed to be done and how and when, there were still those few moments every day that I still found it all a bit too much.

I don't know quite how to explain it, so please bear with me. Every day, I have these fleeting moments where I get lost in my transient thoughts. These moments are like weird, "out of body" experiences, where I see myself doing things, but nothing feels real. They are almost dream-like experiences. Today's moment came when I was holding Sean, who was curled up like a little frog on my torso.

Even though Sean needed comforting, it didn't mean that he didn't want to play or be cheeky when he was in my arms. We had been making funny faces at each other and being silly and laughing, and he had just buried his head in my chest again. My transient thought was: Oh, what a gorgeous baby boy. I'm so glad I'm playing with this little one, but look at the poor thing - he's got all these lines and tubes hanging off him - he must be really sick. His poor parents must be suffering so much. I'm glad this is not my little boy. I'm glad I can hand this little one back to his parents when I'm finished playing with him, and I can go home and take care of my healthy, strong, cheeky boy.

The amount of time it took you to read that last paragraph was the same amount of time I spent lost in my "parallel universe". Then, very rudely, I was zapped back to this world, breathless and numb, and feeling like an idiot that I'd "forgotten" for a few moments that the sick child was mine.

And I cried. Because I longed for the parallel universe scenario to be my reality. I wanted to go home to my healthy child. I wanted a healthy child to go home to. I wanted to be able to play with the sick child, but hand him back to his parents when I'd had enough of playing with him. Then, just as I realised the sick child was mine, I wanted someone to walk into the room and tell me that Sean wasn't really sick, and they'd all made a mistake, and he'd just been really good at acting like he was sick, and we could all go home.

And then I was back in the chair, holding Sean, who by this time had settled quite comfortably into my arms, snuggled up warmly against me, with all his lines and tubes and snaking out of his body suit and around his face. No one was walking through the door. We were still in our hospital room. Sean was still sick. And I was still his mother, holding the sick child.

Right on cue, Sean patted my arm, as if to comfort me. So I dried my tears, shook my head, and carried on.

That's how we do it these days. We just carry on. Our hearts may be broken, but our spirit is not, so we carry on, and do the best we can for our little man.

Grace came by today and brought a truckload of food. After the endless kerfuffle with her car yesterday, Grace finally got the car late yesterday afternoon, by which time it was too late to visit us. With Vinay working again today, Grace had no choice but to bring Danielle with her, so I met them down in the café. I gave Grace a full update on what was happening with Sean, including the news about him getting sicker. During my update, Dr Gray and Dr Percival both stopped by to catch up with me. I felt very important giving an update on Sean to such a captive audience!

Grace and I chatted for a while before she had to leave. Danielle was getting a bit tired and antsy, so I thanked her profusely for the food and wished them a safe and pleasant holiday to Hong Kong (they fly out tomorrow). Danielle would not leave until she had properly waved me goodbye, all the way until the lift doors closed. What a cutie.

Late in the afternoon, when Sean seemed to have lost interest in all the toys, Jonathan opened the bubble blowing set that Lissy had bought for Sean. We hadn't really blown bubbles with Sean before, but with him being such a fast learner, we were sure he'd know what to do with the bubbles floating towards him. Our gorgeous boy just adoredwaving his hands at the bubbles, and loved popping the bubbles even more.

We thought, at one point today, to let Sean down onto the ground and allow him to walk around the room. Having not worn shoes nor walked on solid ground for over 2 week, Sean was a bit wobbly on his feet to start with, but the smile on his face said it all. He raced around as best as we would allow him, with all the lines and tubes connected to the big pole of machines, and he enjoyed climbing up and down the chairs. He got a bit too excited though, and wanted to really run, so we had to cut short the time on the floor. Sean was not happy about that decision.

With Sean receiving more pain medications and antibiotics, it was inevitable that we would require more pumps. Our current pole could only hold so many pumps, so we upgraded to the double pole today. Now all the pumps sit neatly on top of each other, with room for extra pumps to be clamped on to the side as need be. This thing was huge. And it was disconcerting for me to see Sean needing 6 pumps, with a view to another one being added tomorrow.

It didn't take much convincing for Sean to go to sleep tonight. He was out like a light by 7.30pm. I really should get an early night, in light of Sean getting sicker. The medical team have told me to expect many sleepless nights as Sean gets more aches and pains, so I should be well rested now to face the inevitable in the near future. We are being looked after by the very lovely Rita tonight. I call her The Night Ninja Nurse - the machines are never allowed to beep when she's around, as she gets to the machines and changes the settings before they have time to beep. And she's just told me to get some sleep, so I will try.