Isolation mini-test

"We don't function well as human beings when we're in isolation." - Robert Zemeckis

First let me say "I hate Windows 8". Okay, I've got that off my chest...

Today we checked into the Pediatric Clinic at NIH for another day of tests. Immediately they ushered Elise into a checkup room to put her on "contact isolation". Back in February when we were on a visit to NIH she tested positive for enterobacter which can cause opportunistic infections in immuno-compromised people.

When we were at NIH in April they retested and she was negative, but the protocol is 2-3 negative retests before you get a clean bill of health. The problem is they had only retested her 1 time so she was in the penalty box with no hope of getting out. So at least they got a swab today and hopefully she'll come up negative again and then she'll be able to wander about without the stigma of being put in a room with signs on the door and nurses who "gown-up" before entering. We've told her that she should be glad they take this type of care because she'll need it when she goes through the transplant process. But that doesn't help the feeling of being singled out.

The contact isolation event was a small test of what's to come when she really goes into isolation. I hope we can handle it better than we did today. I think maybe it was worse because it was unexpected and the room was really small.

The tests today started with a dental screening. She got to put her head in an xray machine and get a total jaw xray. Then the dentist poked and prodded her gums and declared her teeth and gums healthy. She'll get to use some super strong mouthwash daily post-transplant. It's nasty stuff (based on my experience after oral surgery), so I'm sure it will be a trial to get her to use it.

After the dentist we met with the social worker. She's seen Elise several times and so she was mostly checking in on our (yes all of us) mental states. I don't think she pronounced us "healthy" as the dentist had. She also gave us a voucher for a wig and gave us a flyer for a local place that patients use. We all joked about how Elise should get a grey wig that was in the flyer - it was good for a laugh.

We got to go outside to eat lunch. Elise isn't allowed in the cafeteria until she's cleared from contact isolation, so we took advantage of the nice day and picked a nice bench outside under a nice tree and ate lunch. We must have had a good idea because about 100 other people joined us in the outdoor seating area. It was really nice to be outside after being locked up in a small examining room.

After lunch we were supposed to meet with the nutritionist, but she rescheduled for Thursday. Good thing - Elise and Becky had big cookies from Au Bon Pain and I had a latte. Not exactly what I think the nutritionist would want to see.

Next Elise had her cardiac Holter monitor removed. The little electrodes stuck on a little to well and it wasn't any fun getting them off. Elise did make the best of it by picking out the little sticky gel from the electrodes and proceed to pretend it was boogers (I think the nurse got it started yesterday with the EKG electrodes).

Finally we finished up the testing for the day with a Pulmonary Function Test. This was some more high tech equipment that measures lung functionality. This went smoothly and we were done with testing for the day.

After that we headed off to pick up a new Toyota Rav4 that I'd arranged before we left Ridgecrest. I'd been planning to replace my 2001 Acura MDX and so I sold my car in Ridgecrest before we left. The car buying experience went as anticipated (ie the hardsell maintenance and extended warranty pitch happened just as I expected) and we drove away in a new Rav4 after a couple hours at the dealership. It's a nice car and we got a GREAT price through Costco ($1200 under invoice!)

We're back at the hotel and looking forward to a "day off". Elise was scheduled for a 24 hour urine collection, but we don't have a fridge in the hotel so we're going to do that later this week. When we asked if we could get a fridge in the room the front desk apologized that they'd already given out all the fridges they had but offered to store our "items" in their fridge. We decided not to take them up on the offer and bring down a big jug-o-pee.

So tomorrow we'll be hunting for furniture for the apartment. Its about break even to buy cheap furniture or rent for 4 months, so were going to buy. We figure we might be able to resell or donate it and get at least some of the cost back (through sale or tax writeoff). I think none of us is really excited about going furniture shopping, but we are looking forward to getting out of a hotel room.