I smiled at Mama C today. I decided that I had put the mom’s through enough trauma over the past 2 weeks that they deserved a little bone, so this afternoon after a very enjoyable nap, I woke up, did a little stretch and thew a smile to the mom that was closest. I thought it was pretty nice of me.
We’ve been meeting more of my medical team this week (Weekday’s are very different on this ward – it’s like there are really only people here during the week): my new resident, the neurologist resident, my physical therapist and my occupational therapist (who isn’t actually new, it’s my OT from the cardiac floor Lisa, who think I’m so cute that she just likes to follow me). I’ve been having lots of tests done: they’ve checked my ears and my eyes, made me wear a holter monitor to check my heart and they started to take me off some of my monitors because they think I’m stable enough (the mom’s don’t necessarily agree, they still want to bring the monitors, and a defibrillator, home with us). I’ve been having some trouble with eating and it’s taking me 1.5 hours to drink just 75ml and I need to eat every 3 hours, so really that’s all I’m doing lately. When they try and speed up my eating, I get a very upset tummy and I cry a lot and my poops get really runny. The solution is that I need a G-tube much sooner than they thought I would and Lisa the OT, is really pushing for it to happen faster but there’s a big wait list for this surgery so while it would be great if it could happen while I’m already here, it doesn’t look like that’s actually going to happen. This does make the mom’s a little nervous too though because at the hospital my food goes through my Ng tube with a pump but at home the mom’s feed me by gravity and so they’re hoping to get a pump for at home too so that it’s one less thing they have to worry about. They’re not quite sure how to make it happen, but they’re on a mission.