Day +11: Gloria's Big Day Out

My big day out of the hospital today, and I loved it.

Since being admitted, I had ventured outside the hospital half a dozen times. It wasn't that I didn't want to leave Sean's bedside - it was just that I was too comfortable / tired / lazy to go out more often. I do try and head out every second day, if not every day, and today ended up being a day when I spent a few hours outside of the hospital.

The Henrys came to visit us today. Kirsty and I had planned the visit, to work around both Sean and Lachlan's nap time. Both boys are now sleeping around the midday mark, and both were much more playful in the mornings than in the afternoons, so we planned a morning visit. We arranged for Kirsty to call us when they got to the Admissions Desk, and I would go and collect them and bring them up to the ward.

Lachlan is cuter every time we see him. What a gorgeous little man! It was great to see such a fun little man, and lovely to see Kirsty and David as well. We missed David's surprise 40th birthday party on 30 March because at Day +3, I didn't want to leave Sean's side. And Kirsty completely understood why I couldn't attend. It was nice to still be invited, even if we could only be there in spirit!

David and Kirsty were pleased to see Sean so happy and high spirited. When I brought them up to the ward and outside our room, Jonathan brought Sean to the window, so our visitors could see him through the glass. We chatted for a while - me on the outside with the Henrys and Jonathan and Sean in the room, before we left to go out for a coffee. Poor Sean didn't want to go back to his cot, and Jonathan had a bit of a time getting him to calm down after the excitement of seeing his visitors.

We went up to Belmore Road and sat down at Campos for a coffee and something to eat. Over brunch, the Henrys asked about Sean and what the doctors were doing, and I gave them as much detail as I could. And in return, they told us about their recent holiday to Fiji and David's birthday party. I thought I got the better end of the deal there!

Time flew as we chatted, and before long, Lachlan was getting restless and it was time for me to head back to the hospital. Kirsty and I made plans to have a "girls only" catch up, hopefully with Kyung, in a couple of weeks' time. It would be nice to see the girls and catch up together.

By the time I arrived back in the room, the little man was laying down, getting ready for his sleep. The BBQ for the parents and carers was almost ready, so I busied myself putting away the gorgeous cupcakes the Henrys had brought for us (leftovers from David's party, which had been freshly frozen and slowly defrosted for our enjoyment). José came around to let us know when the BBQ was ready, so Jonathan and I took turns to pile our plates high with delicious food. Sean slept while we ate, and we enjoyed every bite.

During rounds this morning, Dr Barbaric told us Sean's platelets count was low, so he was to have a platelets transfusion today. A pattern was emerging, and this looked to be the way forward for the next little while - Sean receiving a blood transfusion one day, platelets the next, a rest day, and then bloods again.

Sean slept for only an hour while we had lunch, after Naomi woke him while trying to take his blood pressure. Sean was becoming very sensitive to the blood pressure cuff, and now cried every time he saw it, and screamed while his blood pressure was being taken. The screaming and the fighting against the procedure made it very hard for the nurses to get an accurate reading, and they often need to retake the blood pressure 2 or 3 times before they were happy with the numbers. This often led to Sean being even more upset, which made things even harder for the nurses.

Our day nurse Naomi looked quite young, and seemed to need some supervision when it came to giving Sean his medications. She was asking a lot of questions when she was mixing up the mycophenolate, and at one point, very loudly proclaimed that she had never mixed up the medication until now. She went on to complain about the fact that some of the other nurses who had been there longer than her had also never learned to mix up the medication and administer the drugs to the patients, yet she was being asked to learn. Naomi was so vocal about her reluctance to learn something new that I had to voice my 2c worth.

I told her that her loud protestations were not inciting much confidence in her ability to do the job properly. I said I had wanted to go out for a massage, but I was now going to stay until she was finished mixing the drugs before heading out. The supervising nurse quickly said that Naomi was being closely supervised, so there was nothing to worry about. Jonathan urged me to go out, but I was adamant about staying until the drugs were connected to the pump.

Seriously? Really? Bitching and moaning about learning to do something new in front of the patient's worried parents who were already stressed enough about everything else? Could you be any less sensitive?

If I didn't need a massage before, I needed one now to relieve the tension.

It was around 2.30pm by the time I finally left the hospital and headed up to the massage place. It was a very luxurious hour. My whole body was aching, and the massage therapist managed to loosen quite a few knots. I felt like a new person afterwards, and my back was certainly a whole lot better.

Sean did not sleep while I was out, and was extra playful all afternoon. He had his lines changed, and Naomi went to town with the stickers, carefully labelling the lines with "white lumen" and "red lumen" stickers, and annotating the special one that delivered morphine to Sean. Jonathan wanted her to retape Sean's NG tube on his face, but Naomi ran out of time to fix the tape.

I loved the look on his face when I walked back into the room after my massage. The beaming smile lit up the whole room. Jonathan said Sean missed me all afternoon, and as a treat, Sean had plenty of kisses for both me and Jonathan, which made everyone giggle with delight.

After such a long day, I was hoping Sean would have an early night. He has now spent the last 2 hours lying in his cot, trying to engage in play time with me. Every time I look over, he is smiling at me, and waving, and blowing me kisses. It was cute at 9pm, but it's now just past 11pm, and I'm struggling to keep my eyes open, and would dearly love him to fall asleep. The little bugger seems to be wide awake, and nothing seems to be working. I think I might actually fall asleep before he does tonight!