Vega still has a fever. She has been on two types of antibiotics since yesterday, but so far these had no effect on her fevers. She gets paracetamol, fever goes down, paracetamol wears off, fever goes up. At the moment there is nothing we can do but to ride it out. Neutropenia protocol is 48hrs without fever, and all cultures coming back negative before we are being discharged. As she is febrile at the moment we are not even near the 48hrs. She is vomiting occasionally and has diarreha, if this is a bug or a result of the antibiotics is not clear. At this point it could be anything really. I feel weirdly disconnected from the world and time. Hours tick by, always the same, day or night, drips are being changed, medication given, blood taken. Vega has abandoned all sense of day/night too, as she always does when we are in hospital. She has only just gone to sleep and it is nearly 11pm, but her next set of obs is due in 1hr and her next push of antibiotics is due at 2am so it all potters on even during the night. She was up before 5am this morning which clearly didn’t help.
Despite all this she is reasonably well, as long as the paracetamol is working she is pretty jolly. Her day was brightened today by our friend Beccy who came and brought Alys and spent the entire morning and a good part of the afternoon spending time with Vega and helping me out with Alys. Beccy’s readiness to help, at any time of the day and for any length required, with any of my children has been- I don’t even know what word to use… Invaluable? Immeasurable? A life saver? Awesome? My English fails me once again. Beccy and countless other friends have rallied up a network of support-financial as well as emotional, and practical above all. As all my girls know and love Beccy I have shamelessly taken advantage of her relentless readiness to help out. I admire her without end, for her ability to play with the children and sincerely enjoying it too. For her never ending stamina and her “goodness” that just shines through everytime she offers her help. No amount of thank you’s can repay all that she has done and is doing to help out. So maybe some official blog praise is a good start. Vega positively lightens up whenever I even mention Beccy’s name and she was very happy this morning.
Vega’s fever spiked again in the afternoon and in a feverish sleep Vega called out for her sisters. Quite literally, she actually said “my sister! Where is my sister?” I haven’t written about this before but I think the girls are very close. They miss each other a lot when they are not together and they always make a point of making/bringing something for whichever one is not there at that moment. So when Lyra arrived in the afternoon and the most recent dose of paracetamol kicked in Vega’s world was good again. Lyra and Vega love the “magic beds” in the hospital, I am wondering if the novelty of it will ever wear off? They drive up and down for hours. Alys too, tries to meddle with the pair, but her attempts are more in the region of boycotting, rather than joining.
Tonight we are watching her temperature again, especially since a high temperature usually also means a very high pulse. Since the beginning of chemo Vega has had tachycardia (high heart rate as opposed to high blood pressure) on a few occasions and it always seems to worry nurses, doctors… They start to shuffle about, repeat taking her pulse, sometimes manually even to get a more accurate reading. It TOTALLY freaks me out! I suddenly see her little body, so pumped up with poison and all sorts of other stuff, having all these procedures done (yes I know she has had like 6 lumbar punctures, numerous general anaesthetics, and port access like every other day, and no I do not believe this is something the body gets used to or even deals lightly with). And I worry that her little heart just can’t take it. But then just as I feel like my own heart is going to stop the next reading is fine again, or at least borderline. But then as I said before chemotherapy has many affects that are due to an accumulation of toxicity and I can’t help but feeling like I am sitting on a time bomb once again.
Enough of the shitting my pants talk already. Excuse the language but this is my second sleepless night and we do actually have quite a lot of shitty pants, and no they are not mine. So beware of my next blog posts as the obscenities might get worse. Poo head, bummer, bogey face I do not like hospitals.
Now I should really go to bed while Vega is sleeping and before the next set of obs is due. Thank you for all your comments and well wishes!