Think I will rename Logan Rumpelstiltskin... cause all he does now is sleep. Well actually, more to the truth, he has turned by the clock 16 years... he is either pooping, sleeping, or being bottle fed! And yes I did say bottle (tho he will probably kill me for this later). They give him a fresh 'bottle' every four hours that attaches to his nasal tubey thingy... it's straight from the fridge, and cold, but he gets around 80mls and hour now, of high protein food.
Last night was somewhat messy for him and I, in a routine sort of way... Every two hours, almost like clockwork, his stomach cramped and he had to go to the bathroom. This now requires the unplugging of four different machines... three from the machines themselves, and one from the wall (the morphine). As the boy is usually in a hurry to get to his destination, a plan was hatched to ensure speed. The machines moved to beside my bed, and at Logan's cue I was to jump up and assist him in the unplugging, then when he returned, I was to reattach him. Neither of us allowed for the fact that I sleep extremely deeply... (it was how I trained my babes to sleep thru the night so young... just didnt hear them). Anyhow, the first time he woke, he couldn't rouse me, but luckily managed on his own... The second time, he yelled at me, and I left out of bed. Unfortunately, I also was having difficulty staying awake whilst waiting for him, so sometimes he got stuck behind the heavy door bathroom trying to wake me up to let him out again. But, in true Waikato style, we managed to get through to dawn... At about 7.30am, I text Evan and asked him to come up and take over, as I was exhausted and he relied 'great to hear', which I took to mean, that he was glad that I was finally letting him help. What I didn't know, was that he was responding to another text, then promptly went back to sleep! At 8am, apparently, he woke and checked his phone, discovering the actual text, and high tailed it up here. I didn't even know he was here till 9.15 when Logan woke for his scheduled pitstop.
Back to Logan... he still has a fever, which they are treating with high dose antibiotics and and panadol... his treats it with sleep. His adrenal gland is not coping with all the stress and is going into withdrawl again as they try to wean him from the steroids, which is in turn dropping his blood pressure to scary depths. It was something over 29 this morning... AHHHHHHHH!!!!! more fluids! Anyhow they have again increased his steroid dose, but this in itself is dangerous as having steroids increases the chance of developing a fungal infection that he would have no ability to fight... They are giving him antifungal drugs and crossing fingers and toes.
There is to be a conference to be held in Auckland shortly called S.I.O.P.. which means Congress of the International Society of Paediatric Oncology... (think they dont know how acronyms work)... where everyone who is anyone in oncology comes for conference lectures and discussions... The children and parents on our ward are making the centre pieces, which are little craft critters (bees, butterflies, bugs, and flowers etc), so I am in my element... Logan is too tired and Charlee made a couple of things then was bored, so I am getting into it... beats spending my spare time reading or on the computer.
Oh and lastly... I have rigged up a SKYPE. We have access to it as long as we are in the hospital room, thanks to Canteen (please give generously). So just look up my name and I will add you as a friend, then we can chat... and that goes for Logan's friends too. But you will have to use my name. If you to want to SKYPE, just text first, in case chaos beats you to it.
love and hugs to all