This was going to be a happy and positive email, but that mood has passed and I am a little too melancholy for it to be a positive, jovial one, but it many ways it should be. On Friday, following conversations with the medical team, it was decided that Skye would be allowed out of hospital for a few hours on Saturday. As is so typical of Skye, he thinks of other people rather than himself and a lot of the excitement was about keeping it a secret and telling me when I arrived for my ‘visit’, that he was allowed to go home for the day. It was lucky that his car seat just ‘happened’ to be in the car, otherwise we wouldn’t have been going anywhere!
To have Skye and Sally come home for the 1st time in 4 and a half weeks, was a real treat. We picked up Jesse on the way, who was desperately excited, and whilst we didn’t do much, we were all at home together as a family, out in the garden and just simply being at home. Skye has lost his ability to walk again, but he was quite happy sitting in the garden, shelling sweet-peas in preparation for planting and sitting at the kitchen table playing with play-doh.
The time went all too quickly and at 4.45pm they had to head back. Sunday brought the same result and although Skye was a little more tired, enjoyed his time at home and we baked some bread, with a lot of flour and other ingredients going everywhere, made cookies and watched Jesse tearing around the garden. Skye also wanted to go to my school where we rolled balls around the studio, and this helped him to feel as though he was able to do things he was previously able to do. We had fun, but these activities are always tinged with a deep sense of sadness.
Preventing him from coming home more permanently is the inability of his stomach to cope with any kind of nutrition, so has continued reliance on IV TPN as a nutritional source. They have given up on the NG tubes due to the constant vomiting, so we have to come up with a new plan, which could involve bypassing the stomach and getting nutrition straight to the gut. Three options exist; one is a tube, which passes through the stomach and into the gut via the nasal passages, which is inserted under semi-sedation, one is a double ended tube through the abdominal wall with one end in the gut and one in the stomach, and the other is a PEG – Percutaneous Endoscopic Gastrostomy, which is inserted under GA through the abdomen and directly into the stomach.
This comes with obvious further discomfort, and risk of infection, so yet more careful management of pipes and tubes. I am uneasy with the latter, as any form of further invasion of his poor little body makes me uncomfortable, but deep down realise that this may have to be the answer. Proper nutrition is key to keeping him healthy and gives him a better chance of survival.
Sally and I spent 45 minutes on the phone last night discussing things, and because she is constantly hands on is much more comfortable with all of this than I am. His vomiting mostly occurs in the morning, and this gives Sally and I a deep dread that this is being caused by the tumour, which is how it all started. The MRI in 2 weeks will allay or confirm our deepest and darkest fears.