Thank goodness Charlee put up a post last night, cause I totally forgot! Before I say anything... I would like to give the biggest thank you ever to our friend Jill, who spent the night with Logan. Being in the industry herself, it was nothing she hadn't done before, and she made Logan at ease and comfortable. I wish she could have had a comfortable night herself... I think she is headed to RMcD shortly for a nap before driving back to Hamilton.
Jill and Logan unfortunately had stuff all sleep last night, waking at least every half hour to go to the bathroom (Logan, not Jill), which of course required Jill also to be up... She said she hasn't read at 4am for a long time and it felt quite bizarre. It's all about team work and they did well together. A super night nurse always helps, and along with Jill, they had one of the best last night.
Yesterday evening we met with the gastroenterologist who performed Logan's biopsy yesterday. He is a lovely man. He gave me photo's of Logan's insides (which I will post if I can get a digital copy), and we were able to see the damage that has been done. His upper tract is doing quite well... there are a couple of red spots, of which they took samples. His tract from the other end is not so good... it is red raw. They took samples of this also, but didn't investigate too high in case they tore the bowel wall. His platelets were very low so the risk of bleeding was quite high. Apparently they will not be able to give us any definite information for several days as it takes that long to diagnose GVHD, but viral infections may get us quicker results.
He is back on 1-1 nursing again today. He has gained a kilo since last night, so they are giving him foruzamide (god knows how that is spelt!) to made him pee, and another drug to help draw the fluids from the tissue. Logan has huge, fluid filled feet, which don't seem to bother him, but are keeping his dad and I amused.
Each day, I don't think he can get any lower, but he does. There a moments of sunshine, where he smiles and laughs and puts on a brave face, but then the wall comes crashing down and he goes into himself again. He has done this, this morning. The staff have a certain amount of respect for him and his strength. They know he is in pain, but he complains very little, if at all. He continuously gets up to the bathroom, round the clock, having no sleep, and moving in a dream state. Occasionally, his veneer slips and he will refuse to be weighed or refuse his finger prick, or some such... but it is temporary, and I can usually bring him around by getting him to give me a time that it can be done.
Logan has given up entertaining visitors... he likes them to sit with him, but he is past being able to hold conversations or being witty. Windows of his personality still shine through, but his happy-go-lucky attitude is wrapped in a cloud of pain and exhaustion.
Daily, I fight to help Logan have some control - it probably bugs the nurses, but allowing him to weight when he is ready, or let doctors examine him when he is ready, etc, are small things that give him a grip on this crazy scene.
Yesterday and today are the first days that Logan has begun to admit that he feels 'shit'. It has been an eye opener for us all. And was probably hard for him to tell us. But now, he makes no secret of it. He will only say so if asked, but you will get the truth. The nurse and I butted heads gently today. She was trying hard to monitor Logan, and administer his meds and take tests, whereas I was trying hard to ensure that he was not disturbed. We knew that each other was looking out for his best interests, but backing down was not in either of our natures! We compromised, with me getting my own way for an hour, then her getting her own way... LOL! At least he got an hour... the longest sleep he had had in 36 hrs! Having done her thing... it is my turn again now. She is so nice too... in another life time I might even have been friends with her!
Another nurse has come in and said that Logan's blood pressure is becoming concerning. They wanted him to take a tablet. He is not even drinking water. I suggested they find an IV version... they are coming back to me :)
In all honesty... I think our time projections are going to be blown out of the water... It appears his GVHD (to be confirmed) is severe and along with everything else, the road is probably going to get worse before it gets better.
God give us strength....
Logan reminded me yesterday: no-one said life would be easy, just that it would be worth it.