Impatiently

With only a few minutes to spare before midnight, we are finally getting underway with the chemo. Today was a lot longer than I'd anticipated, but I haven't done a terribly good job of anticipating so far, so what's new?

It was really hard to get up this morning. The long days, short, interrupted nights and stress is beginning to take its toll - on all of us. I find myself much less patient than I would normally be with the hospital staff. They're doing very good work, and I understand that they want to meet our expectations, but when it's your baby, and you think it should be done better (and you combine that with stress and lack of quality sleep) its easy to start complaining.

We started our day with news that not only were we doing a GFR test and a bone scan (apparently you can do 2 nuclear medicine studies in the same day) but also an abdominal X-ray. Not something that had been told to us the night before, but ok... We can deal.

Harper was pretty rough to start the day, but she was making slow progress on getting out of bed to use the potty. All pee though - no poop since last Saturday - almost a week without a bowel movement.

She got on the X-ray table, and then, when asked to get off a short while later, questioned why she had to work so hard for such a short time on the table. Can't blame her. On to the next thing.

In the nuclear medicine department (which is in Norton Hospital across the street - fortunately there is an underground tunnel which we are now quite familiar with) they put her on an even higher table (struggle again to get on it) and did the GFR. Fortunately, that only takes 6 minutes or so. Down again. This time she started to slow... Meaning Harper didn't want to move to get off the table. The tech had customers waiting, so we started to push - at which point Harper pretty much shut down.

See, Harper is spunky, but when stress starts to push, and things don't go as planned, she's not really what you'd call a "go with the flow" kind of gal. At home, before all this, she would get upset and run away to another room to calm down. That was one of her main coping mechanisms. Here, laid up in bed, barely able to walk due to pain, she doesn't really have that option. So, she closes her eyes, breathes deeply, and does what really appears to be meditation. We didn't teach it to her, she just started doing it. When there's lots of time available, it works quite well. When time is short, it's a pain, and if we push on her while she meditates, she starts yelling at us to stop talking, telling us she's trying to breath - which she is.

So, they injected the bone scan nuclear liquid and sent us back to the room to wait the required 2 hours.

Later, we found ourselves back in nuclear medicine, after traversing the underground tunnel again (for the third time). 45 minutes later we were done again, and waiting for transport. But, transport didn't come immediately. I began to lose my patience. I even called the desk on our floor to ask them where she was. She nicely explained they have only 1 transport person for the whole unit, and she was on her way. After hanging up, I threatened to take us back ourselves. I mean, after a few trips, we certainly knew our way... But, she showed up, and we trudged back to our room again.

Ok - we were done traveling for the day, right? Wrong. Only minutes after getting Harper back in bed, they came to tell us we had to go back. The radiologist (I assume) looked at the bone scan and determined that Harper had her head cocked to the side, so they needed to rescan her head. Blood pressure building... We spelunked under the street again and rescanned her head. Harper was actually extremely patient. And this time, the transport person waited for us - maybe my earlier phone call worked.

Back to our room. Now time for chemo, right? Nope, not yet. See, the order hadn't been put in yet. Excuse me? We signed the papers this morning? The doctor hasn't ordered it yet? Again, unacceptable. Not cool. 8pm till its ready? Really!? Do you all do anything fast around here?

Oh, and didn't someone tell you we're holding the vincristine because she hasn't had a bowel movement? Umm, no, no one told us that. And we're going to start lactulose every 2 hours. We should get a bowel movement with 2-3 doses. Boy, wouldn't
that have been nice to know 4-6 hours ago? Maybe we could have avoided holding on the first dose?

Oh, and one more thing... We have to check her pee to ensure the specific gravity is in range. News to us again. So, lets just push oral fluids to a child with a distended abdomen and constipation. I'm sure that will be fine...

After much heartbreak, we have had a bowel movement (still holding the vincristine) and her pee checked out after the third attempt.

So, now the chemo (2/3 of it) hangs next to Harper's bed. Harper is completely exhausted, but more comfortable (after the bowel movement). Soon the toxic meds will be coursing through her veins.

And I have no patience for waiting on it either. I pray it works quickly. I pray she tolerates it.

I pray - impatiently.