I had a chance to get away this evening and go visit Raya's sweet little friend Lily (who you may remember from this photo shoot we did a couple weeks ago) at the hospital. It's been about 17 months since Raya's last admission and since then, the huge new addition to the hospital was opened. (you know, the one that we had a fabulous view of from our tiny, cramped, double-occupancy room) On the way there, I realized that I can drive there without even thinking about it. The car could probably take me there by itself.
I've been back there several times for different things (Raya's endoscopies & GJ tube change, awful appointment with the dietitian, etc.) but all of the times I've gone to visit people since Raya's last stay, the people I was visiting were in the new part of the hospital. Tonight, I signed in at the front desk and asked what room Lily was in. The lady told me the number but it was in the hundreds, not in the thousands like all of the new rooms are. I looked at her in confusion and said, "Really?? 3__? In the old tower?" She said, "Yes, it's over in the older part. Do you know how to get there?" I told her I did and she said, "Are you sure? Do you want me to draw you a map?" I said, "No thanks, I know how to get there." Blech. I definitely don't need a map, I know it better than I'd like to.
I walked over to the old tower, passing by the staff elevator, the ugly metal horses on the wall, the ugly horse sculpture, the library, the handprints with kids' names on them, and the surgery waiting room that I've walked by hundreds of times before and got on the elevator that I've ridden in hundreds of times before. A lot of things have changed since they opened the new tower but a lot has stayed the same. (namely the decor and the smells) As I was walking, I thought to myself, Wow, I've basically lived in this place for a total of almost a month. I know a lot of people who have done a lot longer, but that's a lot of time away from home. When the doors opened on the 3rd floor, I walked out and almost gagged. That caught me by surprise. I never thought I'd be bothered by being there. I remember every detail of that floor though. The funky black and silver chairs in the lounge area, the pictures of kids with NG tubes on their faces on the bulletin boards, the teen room that didn't do us any good because it's for teens, the nasty community bathrooms that all the parents had to share because we weren't allowed to use the patient bathrooms, and most of all, the stinking DOUBLE OCCUPANCY rooms with about 6 square feet of living space (if you were lucky enough to be on the side of the room with the window). And I haven't missed ANY of it.
I got there during shift change for the nurses so the day & night nurses were both in Lily's room. The day nurse looked at me and said, "I recognize you. Have you been here before?" Oh dear. I looked at her face, then looked at her name tag and realized that I recognized her too. She was Raya's nurse for 2 days. Given that it's been 17 months since we were there last, I wasn't sure whether to be impressed or scared that she remembered me. :) Hopefully she wasn't remembering me as the emotionally unstable mother from 309B. :) I think she had us on a couple of our better days, lucky for her. Otherwise it definitely wouldn't have been a good thing that she remembered me. :)
I had a nice visit with Lily and her parents. She's "healthy" right now, but they've got some big decisions ahead of them this week and most likely, Lily will be having surgery on Friday to hopefully fix some scary things that have been happening lately. It's a different kind of sad seeing someone else at the hospital with their medically complex/fragile kid. It was sad for me to see Raya like that, but it's totally different walking into a room and seeing another mom going through it and then walking out a little while later knowing that they're not leaving anytime soon. I remember what that felt like. I remember sitting on my plastic couch staring out the window at the cars flying by on the freeway and feeling so strange knowing that the world kept on going even though MY world had come to a screeching halt. I remember having the discussion about going home only to be told hours later that we couldn't. I remember feeling absolutely trapped, claustrophobic, bored, lonely, exhausted, frazzled, discouraged, and suffocated. And cold. It's always freezing in there. :)
It wasn't all negative, thank goodness. Raya was very entertaining when she was feeling good and I recognized that getting to spend that much time alone with her was a rare privilege given that she's the youngest of 4. Most of the hospital staff that we dealt with were pleasant and a lot of good eventually came out of that hospital stay. I also got all the Cran-Grape juice I wanted and the hot chocolate cart came around every afternoon, and occasionally I got special treats like cookies and ice cream. :) The best treat though was walking the heck out of there and not being admitted again for 17 months and counting. I feel guilty sometimes that Raya is doing so well when so many of our friends are struggling so much. I hope that there will come a time when they hit 17 months and counting too.
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