On Wednesday Massimo spent most of the day on continuous morphine but in a very small dose for a very small person. He also had a few extra shots throughout the day when the nurse thought he was in pain. He slept an awful lot and basically just got through the day. In the afternoon we were moved from the Peter Pan Ward (ENT) to the Lion Ward (oncology). Here our room size doubled, we had our own en-suite bathroom and air-conditioning! It felt like the lap of luxury.
Whilst on Lion Ward the nurses decided to organise a special nurse for Massimo. They felt that their skills with tracheostomies had suffered through lack of use and that they could all do with a little refresher. My put up bed was in a corner and I had a little curtain around me, whilst someone stayed in our room all day and all night looking after Massimo. It felt really strange but it did improve the amount and quality of my sleep.
Thursday was a fairly quiet day. Massimo was taken off his morphine completely and he was started on his feeds. He started on 5 mls (one teaspoon) given over one hour and increased by 5 mls per hour every four hours up to 25 mls per hour. We decided not to start his reflux medication again and see whether it was still needed now he doesn’t have the tube in his nose which could have been causing the reflux.
Thursday night was quite unsettled and first thing Friday morning Lynette (his nurse in first picture) and I both thought it was due to his reflux so we restarted his ranitidine and domperidone and by lunch time Massimo was comfy and happy again and very smiley! We had a meeting with the oncologist consultant who told us that the diagnosis is a little difficult because the structure of the tumour would suggest more scar tissue than tumour, however the MRI scan shows how this tissue has behaved which would indicate a tumour. However, what it actually is is fairly academic as they have not changed the treatment as they still think that chemotherapy is the way forward.
We gave our consent to the chemotherapy in the afternoon and the two injections were given at around 5 pm. The most important things regarding the chemo is that gloves need to be worn when changing Massimo’s nappy as the chemicals come out in his urine and it is best if they are not absorbed unnecessarily. Also although his levels of chemo are very low, his immune system will suffer and we will have to keep him as healthy as possible and as far away from sources of infection as possible.
I had mentioned to the nurses that I am due to attend sign language course this morning and that the logistics of getting Massimo home were much easier if they were achieved on Friday afternoon rather than on Saturday. As Massimo was looking so well – he hasn’t looked this well in a long time – and they would normally give his chemo as day care, we started organising for our discharge. We were given a talk on hickman line care, emergency situations with either the hickman line or the gastrostomy, we were given lots of bits and pieces we would need and we were ready to leave.
As J had come in to the hospital early in the morning as he didn’t want to miss the consultant’s visit, he had come in by tube, but my brother and his girlfriend were coming up for the weekend so they kindly went to the house and collected my car, Massimo’s emergency bag and suction and came to get us. We did get home very late (9 pm roughly) but it is really nice to be here.
Massimo has not shown any immediate reaction to the chemo and has spent most of his time at home asleep. I’m off to my course