Monday, January 26, 2009

Settling into 8 East, with a few hiccups

After the PICC line adventure, we moved into a room on the regular floor. It was a double but we were assured that nobody else would be moved in. That lasted about 3 hours, when a post-surgical girl and her family moved in during the middle of the night. The room is very small with two families. This seems to be a sleep deprivation experiment.

We spent most of yesterday in the "activity room" to give the other family a little space. Emily is feeling much better and her lungs are clearing. One of the docs spent some time with us and thinks that it might be best if we just stay here for at least two weeks. There's little point in going home, having her feel bad again, not being able to go to school, and then having to come back. They think we live too far to go home with the Milrinone pump, but if we find housing nearby we might be able to leave for a time. While on IV meds the likelihood of getting a transplant is much higher.

I left last night shortly after they found out that one of the ports on the PICC line was clogged, probably with clotted blood from a morning blood draw. They were going to soak it with an enzyme, wait two hours, and then try to flush it. That means another sleepless night for Deb and Emily.

Jeff left yesterday for his 11 hour train ride back to Rochester. It was great having him here but somebody has to maintain normalcy.

I am losing my housing today at the Devon Nicole house today, so I need to figure out housing. This place is just short walk from the hospital; the only alternative this close is the Best Western at $170/night, so the logistics are challenging. Also, I told the airport I would leave on Wednesday, but heavy snow is forecast so that isn't happening. It's amazing how busy we can keep ourselves without doing anything.

Thanks to everybody for your support...Bob


Hummels said...

I pray every day for Emily's new heart finding it's way to her. Don't worry about anything at home, there is a little band of us that can take care of housekeeping stuff. I'd like to have an "Emily's Heart" day at school for $ donations, would this be okay with you guys? Also, if there's a day she's feeling good next week, maybe she can SKYPE with her homeroom. Let me know what you think. Love to you all, Sue Hummel

Coach Kristi said...

Have you considered contacting the local Ronald McDonald house to inquire about lodging? I'm sure the hospital has information on it they can provide you. I have relatives that live in Boston and have reached out to them asking if they are aware of any other organizations or know any hotel owners that would be willing to donate rooms.