Spirit

Skye has continued to make steady progress over the past few days, and on Monday was able to leave his room for the 1st time in 4 weeks. Once he was in the playroom next door doing yet more arts and crafts, he was pretty reluctant to go back to his confines, but that is undoubtedly a good sign. His medical team are constantly reviewing his situation and amending his drugs as part of his preparation for going home. Drugs are being transferred from IV infusions to Oral, but obviously this demands that his stomach is able to cope with these.

We have seen the return of the Naso-Gastric Tube (in more ways than one), which went in on Friday night with much bargaining on our part and much pleading on Skye's part. He was adamant that he didn't need it and promised us that he would eat properly. He was so eloquent and knew exactly what was going on. I think it almost broke poor Natalie, his nurse, as he used her first name when pleading. It took 3 nurses and Sally to hold him still to get it in. Daddy is too soft for that sort of thing - I just stood and watched! Sally ended up getting the giggles at one stage, it was amazing to see his logic being verbalised and his sheer physical strength after all that he has been through in recent weeks. Once it was in - he settled really quickly and then spent the next 45 minutes connecting up all the pipes and tubes to the pump and feeding bottle. Remembering exactly how all the apparatus fitted together. The replacement bottle for the next day, he insisted on cuddling overnight like a teddy bear!

Unfortunately, he vomited the tube up on Sunday night, so we had the trauma of having to get it back in again. He insisted that Natalie do it, but unfortunately Natalie wasn't on shift. "NO, Natalie's doing it!" and when we tried to explain that Natalie wasn't around, his response was simply "Well, we'll just have to wait until tomorrow". Katie got the short straw, who had ironically been given a badge earlier made by Skye for being the slowest at getting NG tubes in! She did really well, it was in pretty quickly!

He forgets nothing! Which is a little worrying - as tonight he was fiddling with my hair saying, "Daddy, this bit is getting long", "Yes, I suppose it is", I said anxiously as I feared what might be going through his mind. "Daddy, can I cut your hair tomorrow?" "Ummmmm.......yes, if that is what you want to do!" Who am I to say no! Hopefully I can get away with having a comb on this time round, but if not, who cares! How Sally has coped with being cooped up in a tiny room for the past 4 weeks, I have no idea, let alone coping with complete sleep deprivation. She has been truly remarkable.

A home-coming looked imminent, but Skye threw up his tube again tonight, which casts an element of doubt on getting him home. He is obviously feeling better within himself, because he was also chatting this evening about wanting to go to my school and play hockey. So brave! Possibly prompted by the fact that he has had a set of my umpiring cards which he has been dishing out to unsuspecting nursing staff and of course Sally and I. It was quite useful getting yellow cards at the same time so we had to retreat to the ante-room where we actually had a chance to chat to each other.

Skye was due to have an MRI tomorrow, but he is not well enough to have a GA, so it has been postponed to the 1st of April. The outcome will dictate whether we continue with the next round of High Dose or change tack, so yet another critical marker in his treatment plan.