Tuesday, November 25, 2008

Live Blogging Port Removal Day

8:09 am The Husband got Little Warrior up this morning at 6 am to feed her oatmeal and bananas. We have to be there at 10:30, but surgery is scheduled for 12:30, so since they say no food/drink 6 hours prior to surgery, we should be fine. I'll probably still have to deal with some nurse, checking her vitals at 11:30, who will raise her eyebrows when I say she was fed at 6, until I point out the math. What they really want is for you to say that you last fed your child a week ago last Wednesday.

I'm drinking coffee, feeling a little groggy. I was so hopped up on excitement and a Peppermint Twist Mocha Frappuccino last night, I couldn't sleep. I took one Tylenol PM, noting the expiration date of 05/05. I dreamed I was in a submarine, looking at killer whales scratching their backs on coral. It was pretty cool, until one of the whales came over and began bumping our submarine.

9:15 am ... is when we should have left. Instead, I was arguing with LW about what shoes she was going to wear, as she wanted to wear her sister's boots that are way too big. "This is non-negotiable," I told her. This is how I talk to my 3 year old, which may partially explain The Boy winning in his first debate tournament last weekend. They learn to debate out of self-defense.

My cell phone is dead, but no biggie, lemme just grab my car charger. (I'm driving my MIL's car because yesterday the engine light began blinking on the minivan, and the code said something about the vehicle not being able to regulate its temperature. Sounds like a thyroid problem.)

Car charger. Car charger.

The Husband killed yet another cell phone this weekend (phones tremble as he draws near) and borrowed my phone while running errands. Charger is in his car. He's across town. Not helpful.

Drive to town, occasionally worrying that some emergency has happened to our other children and the hospital can't reach either of us. Oh well. I think the BFF-DRE is the In Case of Emergency person.

MIL's car is a smooth Cadillac. After driving the minivan, this is like driving a stick of butter. Smooth, smooth, smooth. I'm a bit of a reverse-snob about vehicles, but I can see why this tempts people.

Valet park because the one and only time you can get parking validation is if your child has surgery. That's one of the two perks of surgery. The other is a pair of pajamas, emblazoned with the hospital logo. This will be LW's 6th pair. She never wears them at home. I think they're itchy.

So here we are, in the waiting room. They've removed the play kitchen with the play food. Perhaps someone clued them in that having that particular toy in a room where all the children have been fasting is cruel and indicates either an ignorance of children or an evil malevolence toward them.

11:10: Now, we wait.

11:24: More questions from nurses. Allergies. Reactions to anesthesia. Apparently the latter can be quite genetic because they always ask if family members have reactions to anesthesia. I always explain that with me, the sedative wears off before the paralytic, which elicits an alarmed look and a lot of scribbling.

It's never been anything dramatic with me -- no waking up on the operating table. But I've had 3 surgeries, and the first two, I woke up after surgery and couldn't move, couldn't talk, couldn't open my eyes, felt like I couldn't breathe. It was pretty terrifying. Completely lucid, but trapped inside. The last time, I was so frantic, I began mentally reciting The Prisoner of Chillon over and over in my head to calm me down.

When I had an emergency appendectomy, I told the anesthesiologist about it. Ahh, he said, and explained to me that anesthesia is composed of two different parts, and obviously my body went through one faster than the other. When I woke up from that surgery, everything was A-Ok.

I'd hate for LW to have that experience.

The Child Life Specialist is calling ...

11:51 Child Life Specialists are cool people. They explain, in kid-friendly language, everything that that is going to happen. Little Warrior seems to be taking it all in stride. The Child Life person gave her one of those stickers with a snap on it that they put on you to hook heart monitors to. She's putting it on and off the plastic piggy bank that her grandmother gave her yesterday.

"Does she want to take anything back in the OR with her?" the nurse asked. "A special blanket, or a cuddly?"

Yes. This plastic piggy bank.

I have a unique child.

I would really like to charge my cell, but there are apparently no electric outlets in this entire waiting room. I keep moving chairs away from the walls, searching.

We're not in cancer world anymore. This is day surgery, so there are children here for all sorts of reasons. Some of the parents look nervously at LW with her bald head.

12:15 Waiting, waiting, waiting. I found a plug, so my cell phone is across the room charging up. I hope I don't forget it.

Two surgeons, in scrubs, just walked in. They are searching for the parents of child. What kind of news will they have for them? Can't tell by their faces.

It was in this room, just a couple of yards from where I'm now sitting, that our surgeon came out and talked to me, The Husband, and my brother and sister-in-law who had stopped by. To tell us that they took out "the nodule." To tell us that there was something on her kidney that they'd never seen before, that looked like a blood blister. That they took every precaution, but if it was cancer, some cells might have escaped, so she'd need radiation.

She won't be able to have children, I immediately thought.

Our immediate thoughts are not the most logical thoughts.

12:30 Some young women in full polished makeup, perfect hair have come in, carrying a gift bag and a balloon. "Oh, there you are!" they say to their friend, who has neither makeup nor perfect hair. They sit with her and her husband, chit chatting. Part of the conversation is about how children's hospitals aren't fun places. Yeah, says the mother, but our mirth is how we deal.

Little Warrior would probably argue with them. But right now, she's cutting covetous looks at the balloon and gift, while she idly plays with one of those bead roller-coaster toys, ubiquitous to every children's medical establishment.

"When are they going to call me?" she whines, coming over to me. I shrug.

I probably should have eaten more than 1/2 a cashew butter sandwich this morning.

12:50 Still waiting, waiting.

First time we did cancer, The Husband was always here for these things. This time around, his job is as a consultant. It's a good job, but if he doesn't work, we don't get paid.

So, I've done most of these things by myself. All the hospitalizations, the dental surgery, the appointments, most of the scans.

And ... it's been fine. Once again I've learned that you can do more than you think you can do. And anything can become normal.

And "help" makes all the difference, whether it was The Husband coming to the hospital to unload our stuff or the BFF-DRE bringing us lunch and a visit.

I think LW needs some cuddling.

1:22 I just want to note that I've been here since 10:30. We are still in the main waiting room.

Do doctors get exasperated when their cable guy says he'll be there between 9 and 5 and still hasn't shown up at 5:10?

It's surgery. This is the time to be patient, because the delay could be because a child needs emergency surgery.

I'm hungry. It's hard to keep my nice on.

1:54 One of the polished young women left and came back with a small teddy bear with a cross on his sweater, attached to a Hello Kitty balloon and a package of Starburst. "I wanted her to have this," she explains to me. "She just has such a pretty face."

Once again, I am awed at what total strangers will just up and do.

LW goes over and gives her a big hug. The pretty stranger hugs her close and says, "I love you." I give her to address for Love Through Action and tell her I'll be mentioning her. She demurs any praise and says, "The Lord told me to do it."

I like that kind of instruction.

3:08 We are back in a different waiting area. LW is in her hospital-issued yellow pajamas, driving a toy car around. We are ready to go.

3:20 Apparently there was a mix-up and they'll be taking another child before us. More waiting. And now, I'm sure:

I really should have eaten more than 1/2 a cashew butter sandwich.

3:40 A resident came and talked to me. Once they take the other child, it'll be about an hour before they take Little Warrior.

This kid is being amazing. Looking at books, watching tv. She has to be starving, since she last ate at 6 am. What a trooper. Little Warrior.

When we were back in the main waiting room, I had "Why, Charlie Brown, Why?" playing on YouTube for her. One of her favorites, not surprisingly. A boy, probably about 10 or 11, began watching it with us. Politely, he asked if it was You Tube. When the little girl in the cartoon said she had leukemia, he perked up. He asked if that was what LW had. No, she has Wilms. I noticed his short buzzed hair. "Is that what you have?" He nodded. "Three years." I told him that LW was done with chemo and getting her port out. He said he was getting one put in.

Which means ... he's been in remission, but judging by the length of his hair, not for very long. And the beast is back.

I am pretty sure that he's the child we're getting bumped for. So it's pretty hard for me to begrudge the delay.

I found an open bag of Haribo cola gummies at the bottom of my bag. When LW isn't looking, I sneak some.

5:02 pm They just took her back.

5:30 pm Wow. No idea this Live-Blog would be so long. Well, LW is still back in surgery. I made it over to the hospital food court before it closed. Wolfed down a Chick Fil A sandwich; it tasted like the most delicious food ever made. Now, of course, a bit of a tummy ache. But better than hunger pangs.

What a day, what a day. The niece of the pretty stranger wound up playing with LW in the "about to go to surgery" waiting room, two little princesses in their hospital-issue jammies. "Now, are you a boy or a girl?" she asked LW. "I keep thinking you're a boy." Little Warrior took no offense.

I talked a bit with her Mom. She was having surgery for reflux. Kidneys were involved, so I said, "Well, the kidney surgeons here are very good. We had Dr. S--." "Oh, he's our doctor!" she said. We chatted about him, how he's kinda funny because he's a major chatterbox (unusual, in my experience, with surgeons), but very smart.

We're all connected.

The polished women and the mom are all sisters, and all moms. Their children are all about the same ages. I am a bit envious of that, I admit.

But I have good friends. And you know what? I have good strangers.

9:19 pm

We are home. I am typing w/ 1 hand, as LW is asleep in my lap. She's drugged up.

I'm tired. And awed with thankfulness.


plaidshoes said...

Good luck! I hope the removal goes smoothly.

ms. kitty said...

Me too! Let us know when you can.

ogre said...

"The Lord told me to do it.

Yeah, but YOU did it. That matters a great deal, in every context I can think of.

ms. kitty said...

Goshamighty, what a loooooonnnnngggg day, LE! What a fabulous kid you have, to manage it all so well!

uumomma said...

"I have good strangers." Makes all the difference, doesn't it?

Christina said...

:-) your posts make me smile