"What is important in life is life..."
"Baby's steroid makes her cranky. She's in general pretty bull-headed, and feisty. But this is so much worse. She caught Snork grabbing a french fry (that she wasn't even eating), and about melted down. She told her sister she can't watch tv in her room. It's frustrating, because I don't really know what to do. I mean, I'm generally a pretty consistent disciplinarian, but... How do you discipline a kid on a drug that makes her act unreasonable?"
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We spent the first several days in the hospital in the Oncology ICU. The nurses told us we could start hanging up Gabby's artwork, so we knew it would not be a quick visit. In addition to the leukemia, her liver function was concerning the doctor, AND she pneumonia. She was a tiny, tiny person to take in all of that.
Trips to Xray were really annoying to her - but she grew more accustomed to them, and would lie still for the radiologist.
On the 5th day, she went into surgery to insert her port. CHOC, her hospital, is adjacent to St. Josephs, and they bring the kids to St. Josephs for surgery. We were wheeled all around through underground tunnels, and by the time we got to the surgery center, I was LOST.
We weren't allowed to be with her for the surgery, so when they put her under, we were promptly kicked out of the way.
2 years later, watching the anesthesia hasn't gotten any easier.
We managed to find our way outside to a coffee cart in the front of the hospital, and I ordered a chocolate raspberry flavored coffee. I spent the rest of our stay trying to find that damn coffee cart again, and never succeeded.
After her port was inserted, she was able to get the IV's removed from her arm - all of the tubes were inserted through her port, instead. After the surgery, she refused to wear a shirt for DAYS.
We were moved to the oncology department after the ICU, to an isolation room. Because of the pneumonia, they didn't want to risk exposure to the other kids. Chemo - and cancer - suppresses the immune systems, so until Gab's lungs cleared out, we had a giant room to ourselves.
We spent A LOT of time doing crafts....
Because Gabby's blood pressure was elevated (due to the kidney issues), she was put on a strict low sodium diet. We tend to eat pretty well at home, and being in the hospital, all she wanted was her favorite things - french fries, mac and cheese, etc. But she couldn't have them.
We started on our daily meds - fourteen in total at the beginning. Some chemo, some for her blood pressure, some for her kidneys.
One of the meds we were warned about - The Steroid.
The oncologist and nurses referred to it as "The Dex". Sounds so ominous. They warned that it tastes vile, everyone has a hard time getting their kids to take it, and the side effects are brutal - they said it would make her mean, unreasonable, and HUNGRY all the time.
When they explained these side effects, I thought there was no way my child would be telling me what she was eating when, and NO WAY she would get away with just being rude. Ha.
We tried to give her the pills - Dex comes in either a super gross liquid form, or super gross pill form - but she had never had to swallow a pill, and it was awful. We tried crushing them up and adding them to delicious things. Pudding, ice cream, both failed. We ended up giving her the liquid, and just getting it over as fast as possible.
With all of the meds, there were so many restrictions on them - this one with food, this one on an empty stomach, this one without citrus, this one 2 hours after eating. So any delay on her part in taking them threw everything off. It completely stressed me out and made me crazy.
It was compounded by her suddenly terrible attitude. If you've met Gabby, you know that she's a nice kid - she's just NICE. She's sweet and thoughtful - and I know everyone wants to think that about their child, but it's actually true.
She turned into a pretty unpleasant creature pretty quickly after the Dex was introduced. Which made the medicine giving tricky. For a small person, she was remarkably difficult to force feed.
|DO I LOOK PLEASED?|
After the blood pressure was resolved, she was allowed back to a regular diet. Apparently, that regular diet consisted of string cheese and donuts. Lucky.
The H and I spent our time divided - during the day, we stayed with her, then we'd swap out who got to go home. We tried eating in the cafeteria once, and it was terrible, so a LOT of fast food was consumed. A LOT.
During the weekends, I tried to get the older girls out for a bit - we spent the day at the Discovery Science Center on one Sunday, another day wandering a mall down the street. But most of my days were spent at Gab's room, watching VHS tapes non-stop. She refused to go to the Child Life room. She barely interacted with the volunteers who came to play with her. She was pretty rude to friends that came, even when they came bearing gifts.
That might have been the worst thing of all - that she was always SO kind and sweet, that it was like an entirely different tiny person, being so rude and obnoxious.