Day +1: Learning Another New Word - "Hypertensive"

Aaahhh, sleep. How sweet you are. How I've missed you.

Both Sean and I got a great night's sleep last night, so when Sean woke at 5am feeling a bit unhappy, I didn't mind jumping out of bed to tend to him.

The overnight feeds have recommenced. and the milk in Sean's belly made him very grumpy first thing in the morning. Sean woke with a scream and needed quite a few cuddles to calm down. Thankfully, it only took 15 minutes to calm him down, and he returned to his cot and slept for another 90 minutes before waking again.

Last night, Jonathan mentioned that he had a few errands to run in the morning, one of which was to go to the Post Office to collect a parcel. As the Post Office did not open until 9am, he would be late getting to the hospital. After the momentous milestone that was yesterday, Jonathan deserved a little bit of a sleep in. As a result, Jonathan didn't arrive at the hospital until 10am. By that time, the medical team had been to visit and checked Sean from head to toe. Dr O'Brien was happy with Sean's progress, and only stayed for a short time before they all filed out again.

Heidi, the dietitian replacing Jennifer, stayed to have a chat with me about Sean's diet. With Sean's appetite expected to wane any day now, Heidi wanted to reassure me that if Sean was to start refusing food, or his body started rejecting food, this was all in line with the chemotherapy and transplant process. If Sean stopped eating, or he wasn't able to retain the food, there were measures that the medical team can take to ensure Sean was still getting the necessary nutrients to sustain his body weight during the recovery period.

Tina ran Sean's obs every hour all day long. She seemed to be concerned about something in the early afternoon, which led to Dr O'Brien returning to our room to check on Sean. It turned out Sean was hypertensive - his blood pressure was a bit on the high side - and it was high enough for Tina to call Dr O'Brien to review Sean. The plan was to give Sean some medication to see if his blood pressure would settle down, and sure enough, by late afternoon, things were returning to normal.

Sean's appetite was showing signs of waning, and the nausea associated with the chemotherapy was giving Sean some problems, making it hard for him to keep his food down. Sean had no trouble eating - he might be a little bit slower at eating, but he was still eating. The problem was with keeping the food down. Sean ate his lunch like a perfect little boy - apple purée and some custard, but during the dessert, the lunch made another appearance.

The medical team was quite concerned about Sean developing mucositis, and they reminded us over and over again to keep up the mouth care routine with Sean to try and stay on top of this condition. So far, Sean did not appear to have developed mucositis, but this may be only a matter of time.

Megan the social worker dropped in while Sean was having his morning nap. It was the first time we'd seen Megan since last Thursday, as her son was ill and she went home to look after him on Thursday, and she had stayed away from us to minimise the risk of infecting Sean with whatever bugs her son was carrying. As Megan does not work on Tuesdays, she missed the big milestone yesterday, but she came in today to see how we were doing and how we were feeling.

I told her that I was feeling more confident about Sean's prognosis. I told her that I was still scared but I felt much more capable of handling Sean's illness now that I've seen how well Sean had coped with the chemotherapy so far. I told her that I cried every day, several times a day, because every time I opened my mouth to talk about Sean, because someone had asked about Sean and how he was doing, I would cry. But it wasn't really crying. I would tear up, and choke up, and find it hard to get the words out without the tears spilling down my face. I'd feel like this for 30 seconds, enough time for the tears to fall down my face, and then the tears would stop. I likened my tears to a sneeze - annoying, but quick to recover from.

I also mentioned that I couldn't believe it was only March. I wrote the date on our whiteboards every morning, and every morning, I was surprised by the fact that we are only in March. Some days, it felt like we were in March 2013, or at least November 2012, not March 2012. The time since Sean's diagnosis had felt like years. Instead, it had been a mere 11 weeks from diagnosis to transplant.

Megan said it was quite normal for me to feel teary. After all, I had gone through in 11 weeks more than anyone would ever go through in a life time. Megan asked how Jonathan and I were handling the sleeping arrangements, and I told her Jonathan was driving back and forth, and I was staying overnight every night so far. She told me that I must continue to look after myself, and I told her that I felt better about this stint in hospital than the last, insofar as I didn't feel completely wedded to the room with no desire to go out for a walk. To see how well Sean had come through the chemotherapy meant that I felt "safe" to wander out to the shops, and be out of the hospital for 30 minutes, and not felt guilty for being out in the world while my little man was stuck inside a negative pressure room.

I told Megan that I felt bad that I hadn't been much of a wife or a friend to Jonathan these past few weeks. I was so wrapped up in my feelings and fears that I had forgotten Jonathan was going through this whole stressful episode too. I felt guilty that I hadn't asked Jonathan how he felt in weeks, nor asked him to tell me what was on his mind. I felt like we hadn't talked about anything but Sean's bodily functions and sleeping patterns for weeks. Megan assured me that in her experience, most men didn't talk much during their children's transplant programme, but they did open up and talk liberally after it was all over.

I worried too much. Maybe I was hypertensive too. I know I am hypersensitive at present!

Overall, Day +1 was non-eventful. Sean's blood pressure dropped to normal by the time he was ready for his bath, and he was asleep almost as soon as Jonathan put the bed time bottle in Sean's mouth. Emma was again assigned to look after us tonight, so I am looking forward to a good night's sleep.