Friday, November 21, 2014

Fever Mystery Theater 3000

Grace woke up from her nap Thursday with a 100.8 fever and within minutes we were on our way to the CHLA emergency room. As soon as we got here the fever was gone but it takes 48 hours to grow a culture to confirm an infection so we're here for observation because her white count (the ability to fight infection) is at zero. Well, 0.02 but to be safe we're here and she's on three antibiotics to protect her.  

I had assumed we would be here for constipation this weekend again anyhow, but the fever beat us to the punchline.

The thing that makes her constipation situation more complicated is...cancer. It compounds everything. They can't do enemas for cancer kids and so options are limited and everything that can help naturally is hard to make happen in real life because of...drumroll...cancer. 

The vincristine chemo she got three weeks ago slows down her intestines so that her body literally can't squeeze the stool out. The sitting stool becomes dry and blocks all other stool. That causes her intestines to swell up like an overinflated balloon which creates more space for stool to become stuck. 

She's on Myralax three times a day, magnesium citrate twice a day, which cramps the poop out, plus stool softeners. It's a VERY strong combination of laxatives, and the only next step is the NG tube with GoLightly, a colonoscopy cleansing medicine that they don't like to use often. And still today she strained for twenty minutes for just a small amount of poop. Even with industrial strength laxatives. 

The doctor gave me a list of seven or eight things we can do at home to help her and before God, I've been doing my best. I feel like keeping ahead of her constipation is like balancing a dozen spinning plates and if one begins to wobble, the entire act will come crashing down. 

We've tried every manner of prune, plum and apple juice, plus having her drink tons of water. We cut out milk and cheese. Bran, prunes, raisins, lentils, beans...I've tried cooking with all of them but she's so nauseous from the constipation she often can't eat or is very picky because everything is tasteless and/or tastes like metal. 

I've been trying to help her walk and we even went swimming in an attempt to get her exercising to fight the constipation but she wears out quickly and with her fever she can't leave her bed often as she's hooked up to an army of monitors.

We've tried warm baths, re-potty training, healthy foods, warm compresses, taking coconut oil...  

The thing that scares me the most is that she'll stop eating and drinking when she's constipated. For days. Which of course means she gets dehydrated which makes the constipation worse. 

It feels like every time we come to CHLA and get a new doctor/nurse team they want to wait until she's vomiting and in level eight pain before starting the GoLightly. That means I have to be very assertive to get her help, which stresses me to no end as I'm not very confrontational and it's very hard to balance listening and accepting advise at the same time being assertive and demanding help. 

But overall it's a happy stay. She's not vomiting yet and is feeling pretty good and eating more than normal. It's just I can see what's coming next and I don't want to be back here in two days with a miserable, vomiting kid. But today we enjoyed our friend Baby Bailey, a treat of of chocolate cake for eating her veggies, and most of all, the CHLA winter wonderland. Which was wonderful indeed. 

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