We were grateful to get last week out of the way. Over the weekend, Skye turned a corner and bar a couple of dips during the week, he has been vastly improved. They have started reducing his medications which has caused a little 'cold turkey', but his neutrophils continue to move in the right direction and his Red Blood Cells are stable. His platelets still disappear at a rate of knots and they keep infusing. If any of you are comfortable with needles, it would be worth considering being a platelet donor. The procedure takes slightly longer than blood donation, but you can give more regularly because the red blood is returned to your body during the process.
Jesse has been in to see Skye on a number of occasions this week. Because Skye's lips had completely broken down, when they managed to get the platelets in balance, each lip became one big scab. Skye was constantly having to moisten them with little 'sponge lollies' which, because of Skye's black lips, Jesse thought were chocolate lollies. He obviously wanted one as well. There was a fairly lengthy conversation, which Sally managed to capture the back end of. It was great to see Skye giggling again last night as we trawled through the Where's Wally books. It was the sunburnt people on the beach who looked as though they had tomato ketchup all over them that caused the most hilarity. It was heart warming to see.
I seem to be acceptable company again after a mini near-disaster on Tuesday evening. Skye asked me to move him from Sally's bed back to his. I checked that the stand was in the appropriate place so that when he was moved, the pipes, 4 of them, wouldn't over stretch and wouldn't pull. The move went fairly successfully apart from the fact that One of the pipes got caught on my shoe. I lifted up said foot to release the pipe only to lose balance, but couldn't put my foot down because the other 3 pipes were dangling underneath. What makes this such a catastrophe, is that the pipes lead directly to his chest and then straight into his heart, if you pull on these, then a great deal of pain is inflicted and you have the horrible possible consequence of pulling the Hickman Line right out and having to go into surgery to get the pipes replaced. I reached out to steady myself on the bathroom door, only to place my hand on Skye's posters, which gave way and my hand slid straight across the door ripping all the posters off, so I grabbed at the stand, only to miss the stand and grab one of the medications that was dangling from the stand and pulled the pipes straight out of that.
It was a complete mess, I got screamed at by Skye and Sally and was ordered out of the room, quite rightly, very sheepish and tail between my legs while Sally and the nurses cleaned up the chaos. We can laugh about clumsy daddy now, but it was no laughing matter at the time and potentially a complete nightmare.
There are times, when Skye is sitting chatting to us, that a horrible sense of normality prevails. He has now started to ask when he can go home, which is a good sign that he is on the mend. Before that can happen they need to wean him off the TPN and get other regular nutrition into him. We wait and see. 3 and a half weeks has flown by in some ways and in others it seems like an eternity. Our target is to get him home on or around the 4 week mark, which is Wed 12th.