Monday, May 4, 2009

We're in isolation.

The doctors suspect that Punkin might have MRSA (methicillin-resistant staph infection), so she's stuck in isolation at the hospital until the tests come back. Luckily that means that we have a room to ourselves with two beds (so maybe when she's resting I can rest some too). Still, I wish she weren't in isolation - that means she's separated from other kids with eczema like her, and she *needs* to see that she's not the only one. Oh well - maybe we'll be out in a couple of days. They've taken scrapings of the really bad spots on Punkin to have them tested.

Isolation means that every time I go out of the room I have to be robed and gloved. I had a choice - glove/robe every time I leave the room, or glove/robe while I'm in the room. The latter is not practical, so I chose the former.

They know it's Punkin's birthday today, though, so they tried to still make it special. One of the nurses put up a sign on our inner door for the birthday girl, and she got some extra special presents from the gift/reward closet. Even though it's her birthday, Punkin still is happy to be here - I think she's ready for some relief, as is mommy. I can't believe my baby turns 9 today.

Our nurse's name is Murray. She's a gruff one, but you can tell she's a sweetheart underneath. I can tell that she's not going to take any flack from Punkin - which is a good thing. Also met one of the P.A.'s (Elizabeth), who took a detailed history. Man it's hard to remember all the little details about stuff when you're put on the spot and asked a million questions! Hopefully I gave them a good picture of what Punkin has endured all these years.

Punkin had her first soaking bath/wet wrap today - actually, she had three today. I understand there'll be three a day for several days, then it'll taper to two. She soaks in a bath for 20 minutes then gets slathered head to toe with steroids. Scary. Then she puts on a layer of warm, damp cotton jammies, with warm/damp tube socks on her hands and feet, then dry layers on top. And she stays that way for 2-3 hours. We've been doing this at home, but judging from what I've seen today, we haven't used enough steroid ointment and we haven't done it often enough.

There's a cute little girl in the room next to us - hopefully we can get to know them.

We were supposed to spend the night tonight so the nursing staff could see how Punkin sleeps (not well, I can tell you). They couldn't reach our insurance company, so we're at the hotel tonight - hopefully they can do the sleep study tomorrow night.

It was an exhausting day, so I'm headed to bed soon - Punkin is already asleep.

Our Nat'l Jewish visit begins...

It's been so long since I've posted. I've had such good intentions, but real life gets in the way. We're still in a huge struggle with Punkin's eczema. We're actually in Denver, as Punkin was accepted into National Jewish Health's 2-week eczema program. In the past, the medical community has failed her - I'm hopeful that Nat'l Jewish will be able to help - it's helped a lot of other people.

Of course, Punkin is worried that they've never seen eczema as bad as hers. :( She told me the other day that she wanted to stop all her outside activities so that people would stop staring at her. A child should not have to feel like that, or go through what she's gone through.

Our first day at Nat'l Jewish is tomorrow (Monday). It's also Punkin's 9th birthday. She is SO excited about getting to the hospital tomorrow and her birthday - she's excited to be turning 9, and she's excited about possibly getting help for her skin. Little does she know that tomorrow morning the poking and proding begins, probably with a big blood draw - which will be painful for her, because the inside of her elbows is flared and pretty raw. We spend all day tomorrow, tomorrow night, and all day Tuesday at the hospital, and then can come back to the hotel Tuesday night. Her skin is so flared, though, that I wouldn't be a bit surprised if they wanted us to stay another night. We've fought staph infection after staph infection this year, and she just got off antibiotics about 3 days ago - and I can see the infection coming back, plus her glands are swollen again. Poor baby - she has such a sweet spirit despite everything she's been through.

We're trying to have a little fun along the way, amidst the hospital prep. We arrived in Trinidad, CO Friday night, and drove to Colorado Springs Saturday morning and spent the afternoon at Focus on the Family. The girls had SO much fun playing at Whit's End and having lunch at Whit's Diner. They were disappointed, though, that they didn't get to see Whit, and they didn't get to do the recording (it was full for the day). We bought way too much stuff in the store, but we had a great time. We drove on to Denver Saturday night, got checked into the hotel (I had the good sense to reserve a small suite, since we'll be in it for 2 weeks), went to dinner, and shopped at Target to get essentials for our stay.

Today we spent most of the day at the Denver Museum of Nature and Science, and it was wonderful! Also saw an IMAX film, and another film with the Zula Patrol on space. We were there from around 11am until 6pm, and probably could have stayed another 3-4 hours if the museum hadn't closed.

I'd better get to bed - we have to be at the hospital at 7:30 tomorrow morning. Luckily the hospital is only about 5 miles from our hotel (can I pick a hotel or what?).

Good night all...