We waited with high hopes Friday morning for the results of Adam's blood tests to show that his neutrophils were on the rise and he could go home, only to find our hopes dashed: they were down again! On Wednesday they had gone up to 0.4, but Friday they were 0.2 and they are still at 0.2 this morning too so it looks like we will be spending the weekend in and out of hospital, waiting.
Adam in himself is doing really good. He looks good, he has energy again, and his mouth is beginning to heal from those awful ulcers that he had for the past two weeks. He's even sleeping well at night, which is a real relief and makes staying at the hospital a little easier to stomach. That is in part due to the portable blackout blinds which I finally brought from home to put up on the windows--it looks like we are living in a little cave now, but it helps with the light that keeps waking Adam up at night. I spent the night last night and he slept through and was not bothered about his infusion at 2am. It was the first night ever in hospital that I didn't have to give him melatonin to go back to sleep, and even had a relatively restful night myself. We both needed it after having Agnes with us the night before--she's got quite a reputation with the hospital staff now, and knows how to press the "code blue" button too!! (I can honestly say if we ever have an emergency on the medical ward, we'll get a very quick response!)
So, the question on everyone's mind now is, why would the neutrophils go down again? There doesn't seem to be an answer to that question, even for Adam's consultant, or at least not one that is obvious. The main reason to stay in and on IV antibiotics now is for safety, to hopefully prevent Adam getting something that his currently defenceless body could not fight, like a bacterial infection. This seems highly ironic given that every member of his family is fighting a virus right now, coughing and spluttering in the room alongside him. But giving us a bit of safety until his body picks up is comforting as much as it is tiresome to wait. In the meantime we can get out for little breaks between his day-time doses, though stepping out into the freezing Aberdeen wintry cold makes one just a little bit glad for the warmth of the hospital to return to!
Other positives this time include the four-times-a-day bath that Adam has been administering to himself--he is possibly the cleanest patient in the hospital! The other positive is figuring out I can watch movies on my computer next to him through the long evenings...oh boy am I grateful for lovefilm.com!!
Once again though, this time in hospital has given me the chance to reconnect with others that in the common parlance are "worse off" than we are. I consider nothing more worse off than spending days, weeks and months in the hospital living in the same limbo, the same artificial lighting and tiny box rooms and not really knowing if or when things will get better. We only get a taste of that at times, but a couple of my friends have been stuck in hospital with their children for months now and I continue to be amazed at their determination and the light they bring to other people. These mums have seen so many people come and go and yet they don't seem to get discouraged but instead make friends with everyone, taking time to talk to other worried mums, hold crying babies, laugh with staff and support the people around them. I know they must get discouraged and have down days, but instead of showing their despair they choose to care for other families and that is something truly inspiring. I am grateful for being able to laugh with them a bit, and honoured to know them.
And of course, I only know them because of Adam and his needs and experiences. So once again, the "cloud" of disability has the shining silver lining of the beautiful people you meet because of it.
How Western ideas about success fail disabled youth
57 minutes ago