Day +23: Hitting All The Wrong Marks

At the risk of sounding like a TV doctor from, say, Grey's Anatomy, Sean was a mixed bag of medical jargon today.

Sean was hypotensive. Then he was hypertensive. Then he was tachycardic. His respiratory rate was up. And for a short time, he was also febrile. Nifedipine was our friend today.

We had planned to go home tonight for an overnight stay, and have dinner with my parents before going home, but those plans were put on a tentative hold when Sean's temperature in the morning was 37.6°C.

At rounds this morning, it was noted that Sean's platelets count was very low, and he would need a platelets transfusion today. Sean had had platelets transfusions before, and never had any problems. Not today. Today, Sean had a small reaction to the transfusion, at first returning an abnormally low blood pressure, and then becoming tachycardic, and later, his blood pressure went the other way and he became hypertensive.

With Sean's bottom becoming redder and redder, and there was now a real danger of breakage of the skin, coupled with the whole kit bag of conditions, there was no chance we were going to be able to get gate leave to go home tonight.

On the other hand, we had so many visitors today that it would have been hard to organise ourselves to go home tonight. And anyway, I want to use my new sofa bed a few more times before kissing it goodbye!

Sean seemed to be fine, besides the sore bottom. His energy level remained high, as were his spirits, and he was still just as playful and cheeky as ever. Even when he was sitting on the bed, wrapped in a bunny rug, shivering from hypertension and tachycardia, he was still trying to play with us.

Our first visitors for the day were Kym the music therapist and Kylie the play therapist. Kym only worked on Thursdays and Fridays, so today's music session was with Kym. Jonathan and I liked her style a little bit better than Verena's style. Kym was more rock n' roll compared to Verena's more folksy, chilled out style. When Kym and Kylie arrived, Sean was disconnected from everything - I'd disconnected his feeding pump at 6.30am when he woke up and refused to go back to sleep. Kym asked if we could put Sean on the floor so they could have a larger space to play. We popped some pants on Sean, as well as his socks and shoes, and let him run to Kylie for cuddles.

The session was a lot of fun. Sean played with everything that was put in front of him. He loved the music, and he loved Kylie's bubbles as well. He just lit up the room when Kym and Kylie were here, and he really kept Kylie busy, moving around and dancing.

While Kym and Kylie were setting up, Bec from the Genetics Department came by with consent forms and blood test requests for me to sign. Bec told me I could go and have the blood drawn from the pathology people in the Prince of Wales Hospital, which I did later in the day. The ball was well and truly rolling now.

Bec stayed long enough to explain the consent forms, and told us she would keep in touch via email and phone. After she left, I went to join Sean and Kym and Kylie and we played and danced for a while. Megan dropped by, and saw that we were busy, so she signalled she would return later.

With everything that was going on, we never did manage to get out. Our gate leave was revoked when the team came to review Sean in the afternoon, when he was all over the place. On the surface, Sean seemed fine - he was still happy and smiling and playful, but the numbers on all the machines told a different story. The team was worried enough to keep us in the hospital, so our overnight stay at home would have to wait for tomorrow.

After telling my parents in the morning that something wasn't right with Sean, they drove over to us and paid a visit. Sean was thrilled to see Gong Gong and Por Por, and we had a lovely visit. We had been looking forward to having dinner with them tonight, but there will be other chances.

Luckily, by late afternoon, everything had settled down and the numbers were looking normal again. Sean's blood pressure was good, and his respiratory rate was back to normal, as was his heart rate, and his temperate too.

It was disappointing that we didn't get to go home today, but ultimately, we want our little man to be well before leaving the hospital. A delay of one day was not going to make much of a difference. As Jonathan said, we were still ahead of our earlier anticipated schedule - we thought we would still be in hospital until mid-May, but here we are, mid to late April, and we should be home by the end of the weekend.

I really hope Sean's bottom improves overnight. It was looking pretty bad tonight, and there were spots that looked like the skin was very close to breaking. Poor thing. The last time this happened, it took nearly 2 weeks to heal, and it was so painful. The welts got so bad, they actually bled. I hope this won't happen this time - we were being very careful, and had been using anti-fungal cream and barrier creams to help protect the sore area.

On a positive note, Sean had been tolerating the bolus feeds very well, and he hovered down lunch today. Way to go, little man! The sooner you start to eat food again, the sooner that awful yellow tube can come out of your nose. Keep it up, darling boy. As my family would say, 加油, little man, 加油!