We need to get out of this place. It’s nasty. There are germs and microbes that I don’t even want to think about. The kid down the hall with MRSA went home this morning … although I’m assuming she no longer has MRSA.
Then there’s the cancer unit. The world-renowned Seattle Cancer Care Alliance, Mary M. Gates Cancer Unit. Huge signs on the entry doors read, “STOP! Do not enter if you have cold or flu symptoms … etc, etc”. It sits right in front of the Train elevators, which I use multiple times a day. More often than not, a cancer patient wheels or walks out of the unit. Most are bald, which means chemo. Some have hair, which probably means radiation. The ones who are swollen up beyond recognition may have lymphoma. Many have NG tubes up their noses. Some are too frail to walk. Others are in street clothes, excited to leave and perhaps in remission. They range from toddlers to teenagers. It’s heartbreaking. It makes me think of the hell my parents had to go through when my brother had cancer. He was bald, frail, and had an NG tube. He walked in and out of the hospital until one day, we all walked out of the hospital without him because he died. I hate the cancer unit and I wish I didn’t have to walk by and be reminded every day.
There are some really, really sick kids here. Jennah is hardly sick in comparison. Code blues are called on a daily basis. And those don’t include the codes that are called within the ICU or cancer unit. I count our blessings that Jennah is doing as well as she is. We are also thankful that Jennah is not cognitive and totally clueless as to what is going on. Many of the kids here are terrified and confused. When we were in the surgery prep area yesterday for J’s PICC procedure, there was a young man, maybe 11 years old, who looked very brave and very tough, but very sad. I had seen him come out of the cancer unit a couple hours earlier when I was running out to the cafeteria. I heard the nurse tell another to take his parents out to get a pager because the boy needed a moment. Sure enough, as the parents left, the nurse (a manly male nurse, btw) took his hand and said, “you can cry now.” And so he did. I had to pull the curtains before I totally lost it myself. I just felt so sad for that boy.
It’s frustrating that we’re still here. After all, Jennah is far from being as sick as these other children. We’re just taking up a whole private room. But no, they won’t let us leave. And a care coordinator just signed me up for TPN teaching for Tuesday. WTF??? I thought we were going to get out this weekend …
Plan for today:
- start Pedialyte and try to tolerate 35 ml/hr without retching.