Mommy set up a play area in the room.

Hi all – We are officially 14 days or two weeks into this hospital stay. Sally and Nicole took advantage of a quiet Sunday and slept in til 9am this morning. She’s doing well when on painkillers, which we now give her every four hours. Although its good to see Sally feeling well while on them, its frustrating not knowing what kind of pain she’s actually in since she can’t tell us. We’ve found that although Sally has more energy with the new painkiller she’s on, it also raises her heart rate and may be a reason she’s had difficulty sleeping. Tonight we just tried giving her morphine again which typically has the opposite effect. If she sleeps well on it, we may look to use that at night and the new painkiller during the day.

Sally was doing well all day, when I arrived she had been eating and playful, however she took a very long nap today which is unusual for her as of late, especially on the new painkillers. She also ate very little the rest of the day. We’re going to have to keep a close eye on her for mouth sores, nausea, and other symptoms of being neutropenic at this stage in the cycle.

On a positive note, Scarlett and her parents got to go home today. There’s lots of empty beds on the floor this evening, which is a good thing. I counted 33 total beds on our floor, Sally and I have probably done 1,000 laps of the floor together so you look for things to keep the mind occupied. Oh, it takes 110 seconds to walk a lap on average.

I got to spend some quality time with Thomas and William this morning, my sister and I took them to a different playground and went for a long walk along the water overlooking the Manhattan Skyline. Nicole left early today so she could do the same. Nicole and I also figured out how to do video chat on our phones today, so the boys got to see and talk to Sally, who perked up and smiled as soon as she heard them. We’ll have to do this more so they can all see each other and the boys can talk to us before going to bed when we’re here.

So I was just told by our nurse that somebody (a resident?) switched Sally from her round the clock anti-nausea meds to “as needed” for some (stupid) reason last night. This means she never received today and is likely why she’s not eating. This is why Nicole or I ALWAYS needs to be here, somebody has to make sure Sally is getting what she needs.

I have a Super Man shirt that I hate wearing, always felt cheesy in it. I had it on two weeks ago and a little boy here saw it and was convinced I was the real Super Man. I saw him again yesterday, and he actually remembered this and was confused asking where my costume was. So today I wore it again and he was happy to see it, especially since he was in a Batman Tshirt just like it. He proceeded to challenge Sally and I to a race around the floor, which we obliged lugging our IV poles with us. He won, Batman beat Super Man.

Please keep Sally in your thoughts and prayers.

Matt