Yesterday afternoon Evelyn was set free from hospital, with orders to follow up with the paediatric team in a week. She’s tolerating the phenobarbital relatively well, if by relatively I mean “sleeping all the time” and “looking rather comatose right now”. She is still waking for feeds, which is the important thing.
Now that we’re home though, I can feel the mental breakdown coming. So far I’ve managed to put it off with various things that needed doing, like cleaning out the pantry, tickling the older children and getting dinner in the slow cooker.
It’s coming though. The school holidays are nearly over and I’ve spent most of them in hospital with the baby. She’s eight weeks old tomorrow and so far has spent nearly as much time in hospital as she’s spent at home. It doesn’t seem fair, does it?
Evelyn might be fine. She might be terribly unwell. We won’t know until her metabolic tests start to come back over the next few weeks. I’ve spent the last three weeks helping to hold her down while doctors and nurses stuck needles in her. I’ve dripped sucrose in her mouth while she screamed until she went blue. I’ve cleaned dried blood off her tiny feet, and kissed IV bruises. I know where to find the adhesive dissolving wipes and which tapes she is allergic to. I know which of her veins will give good access and which won’t. I also know now that while doing a heel prick to get blood might sound less traumatic, it’s not and you shouldn’t do it.
Now we’re home again, waiting.
I stood under the shower last night and there wasn’t enough hot water in the world to wash the grimy hospital feeling off my skin. I soaped and scrubbed and could still feel the sweat from days of stress on my skin. I bathed Evie and delighted in the fact that she smelled like home again, not like blood and tears and hospital linen.
I think one of the things I miss most when I’m in hospital is music. Music is my sanity saver when things get hard, and you can’t exactly turn the music up loud and sing when you’re one of four cots in a ward.
Amanda Palmer released her new album “Theatre is Evil” recently. I backed her Kickstarter because I’m a fan (see, here and here) and I’m enjoying her album a lot. It’s currently the soundtrack to my mental breakdown as we wait for Evie’s tests to come back.
It’s nice to have good music to listen to while I try not to sit in the corner and rock.
Anything else you want to suggest doing to put off my breakdown?
[So, Evie is still seizing, despite the meds. Her eyesight appears to be sporadic, and she’s occasionally tracking with her eyes, which is so relieving to see. Of course, her blink reflex is still not great, but we won’t know if her vision is diminished, or affected by the seizures until she’s a bit older. She’s still not smiling or showing any interest in toys or hanging/dangling things. I don’t know if she’s only tracking with her eyes because we’re giant dark blobs of stuff she can see, or not. It’s going to take time to work out what is going on there, because frankly she’s too little to know anything for sure.]