I thought it would be useful to update you on Sally's situation as it is. Skye is in isolation as you know, with an en suite and an ante-room. This is so that his room can be pressurised so that when doors are opened, air flow is out and not in, to protect him from infection. From an infection point of view we should be over the most critical period as it looks as if his stem cells have taken and his last blood count showed a sign of the all important neutrophils!
When Sally is here on her own, it is nigh impossible for her to leave the room, even to get herself a cup of tea, etc. Fortunately, she has her own fridge in the ante-room and Diana and I have been ferrying meals in for her, which are much appreciated. Skye's situation demands her care 24/7, literally! He needs assistance to rid his mouth of a profuse gluey saliva, if this doesn't happen immediately, he starts to choke and panic and his heart rate rockets, as does his blood pressure. This happens about every 5 minutes during the day and 15-20 minute intervals at night. As you can imagine, this is an exhausting process for Sally.
Tonight they have relaxed the 1 parent rule for us so that I can be here so that Sally can try and get some sleep. She is at least lying down and pretending to sleep, while I jump up and down to tend to his nose or mouth or head or anything else that is causing him distress. He is now having frequent nosebleeds which obviously struggle to clot and we need to be very watchful and act quickly when they occur.
Today he has been diagnosed with vascular occlusion disease of the liver caused by bleeding within, from the destruction of the cells. This means that his body is chewing up platelets to try and stop the bleeding. Each time they infuse platelets, they rise and immediately fall again. They are now taking full blood samples every 12 hrs to monitor the levels and keep a watchful eye. Due to his lack of platelets, his broken down tissues around his mouth, refused to clot, and were just a constant source of bleeding this morning, trying to manage that situation was extremely difficult. They have crusted over now but are in delicate balance.
Vomiting blood is understandably distressing for Skye to see and he broke Sally's heart this morning when he said "I am not really very happy at the moment" coupled with silent tears. Skye is on 10 different drugs in any given 24 hour period with 22 different infusions, which are often simultaneously administered. Each time a drug finishes infusing the buzzer beeps and you have to call the nurse, but each one also gives a 3 minute warning buzzer which needs to be silenced. He is also on a constant infusion of oxycodone and a bag of nutrition. Each infusion is followed by a flush through his pipes, which makes for a very busy day. Not surprisingly he has a nurse assigned, whose sole task during the day is to administer his drugs.
In between all that Sally has to find time to prepare the swabs with moisturiser, ensure that there is cold water on standby to keep him cool, adjust the fans to his requirement and do all the other bits and pieces that are part of everyday life. He is on diuretics to rid him of excess fluid, which clearly has management consequences. The nurse is currently swapping over the drugs, and infusing yet another bag of platelets, having got on top of the most recent nosebleed, machines beeping, pipes being clipped, others being opened, setting the flow rates, not forgetting taking his temp and blood pressure etc.
What has made things even trickier, is that wifi and internet have been sporadic to say the least, and there is no mobile phone reception, so there is a severe lack of communication with the outside world. Tonight is a rare occurrence of wifi reception being good, presumably because everyone else is asleep! Do send Sally the odd email. A bit of news of the outside world and a bit of friendly banter would go down well. It is pointless sending text messages, as she can't receive them.