"Home is any four walls that enclose the right person." - Helen Rowland
All is well here. Elise's neutrophil counts are dropping but not so low that she's isolated yet. She's feeling mostly fine, maybe a little fatigued but nothing else to report. They've started a few days of Palifermin to help ensure the typical mouth sores are minimized, fortunately Elise hasn't had problems yet but the peak is from D+3 to D+10 depending on who you talk to.
Because her counts are still up, we've been taking walks around the NIH campus in between bouts of reading, web surfing, TV and boredom. Yesterday Becky and Elise watched a deer for a while (while I spent a few hours at a few of the art museums). The NIH campus is in the middle of residential housing, but there is a healthy deer population that makes an appearance periodically. Surprisingly enough, a black bear showed up on the campus on Friday and climbed up a tree near the metro station until the wildlife management folks could dart it. It was quite the buzz around here.
So I thought I'd take the opportunity to give you some sense of Elise's living environment here. The picture above is the entrance to the Clinical Research Center. During the week its a bustling place as patients, visitors and employees come and go. It's unlike most hospital entrances because there's no emergency room here and it's not open to the general public. Rather it's on a federal installation surrounded by a (nice looking) fence and armed guards. Also, most of the employees come in through another entrance that's more convenient to parking and public transit options (metro, buses, etc).
The lobby area is spacious and nice to sit in and have a coffee. But only during the week. This is primarily a research clinic and so most patients are outpatient and most employees work M-F. On Saturday and Sunday almost everything shuts down and the place has the atmosphere of a bank on the weekend. This picture is on a Sunday, so there is no one here. In fact the kids wing (which is just off to the right in the photo) has only 5 kids this weekend including Elise.
There are nice seating areas on each floor around the atrium so you can find someplace cozy and/ore secluded and just hangout. There is a patient library on the 7th floor as well as a small gym and chapel. The gym is used for patient rehab but its also open a few hours each day for patient visitors. The library has the typical books, magazine and newspapers. They also have newer DVDs and CDs.
Dining for patients consists primarily of something very similar to room service in a hotel. There is a menu and you call to order what you'd like. They know what your dietary restrictions are and so they won't let you order things you're not supposed to have. Right now Elise is unrestricted, but soon she'll transition to a "regular immunosupressed" diet. She won't be able to have berries, lettuce, unpasteurized milk and egg products, etc - anything with above average loads of mold and bacteria. The menu is pretty large, but try eating every meal at the same restaurant for 6-8 weeks and even the biggest menu gets boring.
There are 3 eating options for visitors: Au Bon Pain has pastries, soups, sandwiches and most importantly coffee drinks. The main foodatorium is a short walk and offers a foodcourt like setting sort of like a cruise ship. Lots of variety until you've eaten there for a couple weeks. It caters primary to employees and is only open during typical work hours. There is a smaller cafeteria on the 2nd floor that has longer hours and is open on the weekends (but closed on Sundays at 6pm - I know). There's also a small alternate coffee place that opened this past year that serves coffee like "Velvet Hammer", etc but its only open during normal work hours.
The kids wing (called "1 Northwest" because its at the north-west corner of the building on the 1st floor) can accommodate about 20+ inpatient kids and a bunch more outpatient kids who are recovering from procedures, etc. Most of the office visits happen in other parts of this huge complex. It was originally constructed to house about 500 patients! The core of the facility was built in the 1950s and its been added onto ever since. The part Elise is in was opened around 2004 so its fairly new.
The wing has a "play room" with toys and craft materials staffed with recreation therapists, a "family room" with air hockey, Xbox, and a place to sit and watch movies as a group, a classroom staffed with 2 teachers (where Elise is going an hour each day), and they have a patient fridge, microwave, ice & water machine. They also have a linen closet so you can get new linens, towels, etc whenever you want/need.
The room Elise is in has a special type of air handling. It's a positive pressure system, meaning that air rushes out the door when you open it. That way contagions in the hallway can't get into the room (unless someone brings them in). There's even an alarm if the air pressure in the room drops or the door is held ajar too long. The air coming into the room goes through special filtration to eliminate molds, bacteria, and viruses. As I mentioned in my last post, the filters don't seem to remove odors (e.g. cream corn). There are other types of rooms on the wing that handle air differently, for example there are negative pressure rooms for kids with things like TB that they don't want to escape the room. But most rooms have standard ventilation.
The room has an TV on an articulating arm so you can watch it sitting in the love seat or in bed. They have the standard set of stations including a couple in house movie stations (one grown up one "family" oriented). It's hooked up to and xbox so you can play video games (none of us do) or you can watch DVDs.
The love seat in Elise's room slides open into a single bed that Becky or I occupy each night. One of us is required to remain with Elise 24/7 (well not exactly, they let us get meals at the cafeteria and they encourage giving Elise some "alone time"). We have a REI camp mattress that we use on top of the cushions to even things out. I can sleep pretty well but then I don't normally roll around a bunch either.
Elise's window fills one wall of her room. It faces North and opens out onto some greenery. It doesn't get any direct sun, which is a blessing as that would make things too hot at times or too dark at others. All in all for a hospital room it's nicely arranged/configured.
We've added a few pieces of furniture: a set of shelves and a couple tray tables. The shelves hold books, craft project materials, and in between meal snacks (Elise is a grazer). The tray tables hold our computers. We've also reserved a shelf as the charging station for the obligatory electronic devices. Thank God they have Wifi!
They allow us to decorate as we want and the walls are gradually getting covered with posters, get well cards, and artwork that Elise has created.
Well that's probably more than most of you wanted to know and less than anyone contemplating a stay at NIH needs to know.
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