Today was a better day. We got Lily's labs turned around, and she had much better color and energy. She took most food today & kept it down. She still flat out refuses any liquids, but I think that might be partly due to being on IV fluids for 24+ hours, and the fact that her IV is in her right, dominant, hand so she can't grasp a cup.
We're HOPING they'll let us come home tomorrow. I think if her labs are stable, she's still taking food & liquid (we're forcing the liquid at this point), they'll let us come home. I also think being in her home setting where it's familiar, routine, and comfortable will help Lily.
My grandma has been diagnosed with Angioimmunoblastic T-Cell Lymphoma, a rare & very difficult to treat form of Lymphoma. If you can spare good thoughts, my family would appreciate it.
Saturday, February 16, 2008
Friday, February 15, 2008
Keto Diet, Day 3
*sigh*
Things aren't great. I'm ready to give up, really! I'm having major self-punishment for voluntarily putting my girl through this!
We're just finishing day 3, and Lily can't keep anything down. She flat out REFUSES any liquid, which is so so so uncharacteristic for her, and now she's on an IV.
She's in high ketosis, and is acidotic. Her CO2 is very low (10), so they have her on an IV with sodium bicarbonate to try & raise that.
AND, despite all this, I'm still seeing seizures, so it all feels for naught. Honestly, I'm ready to have a meeting w/our neuro & dietician and tell them that unless they can give me good reason to keep going, I'm ready to pull the plug! I'd rather deal wtih some seizures each day and have Lily be happy & herself, rather than no seizures & have her be in this awful, lethargic, horrible state.
All of this is a relatively common side effect of starting the diet. I mean, we're COMPLETELY changing her metabolism which is a shock to the system itself, AND she's on topamax which can make the blood chemistry out of whack as it is, and add to the acidosis. None of this means she can't tolerate the diet and we have to stop. But it is so hard to persevere & push her through this hard time with blind belief that she'll start to feel better and will (hopefully) get some seizure control.
What a crap-sandwich Valentines Day.
Things aren't great. I'm ready to give up, really! I'm having major self-punishment for voluntarily putting my girl through this!
We're just finishing day 3, and Lily can't keep anything down. She flat out REFUSES any liquid, which is so so so uncharacteristic for her, and now she's on an IV.
She's in high ketosis, and is acidotic. Her CO2 is very low (10), so they have her on an IV with sodium bicarbonate to try & raise that.
AND, despite all this, I'm still seeing seizures, so it all feels for naught. Honestly, I'm ready to have a meeting w/our neuro & dietician and tell them that unless they can give me good reason to keep going, I'm ready to pull the plug! I'd rather deal wtih some seizures each day and have Lily be happy & herself, rather than no seizures & have her be in this awful, lethargic, horrible state.
All of this is a relatively common side effect of starting the diet. I mean, we're COMPLETELY changing her metabolism which is a shock to the system itself, AND she's on topamax which can make the blood chemistry out of whack as it is, and add to the acidosis. None of this means she can't tolerate the diet and we have to stop. But it is so hard to persevere & push her through this hard time with blind belief that she'll start to feel better and will (hopefully) get some seizure control.
What a crap-sandwich Valentines Day.
Wednesday, February 13, 2008
Keto Diet, Day 1
Well, we've had a looooooooooooooooooooooooooooooooooooooooooooong day here at Children's. First, Lily was to fast after dinner with the exception of "Keto approved drinks" (no-calorie fruit flavored water, or the like). No meds either, until after labs. We were to be here at 11:00 for labs, then a noon admit. After labs, Lily was allowed a cup of "Keto milk" (diluted heavy cream), but she wasn't too excited about it. Well, then our room wasn't ready at noon. Then it wasn't ready at 1. FINALLY at about 2:30pm we were taken to our room, a decent sized single on the medical floor. It's noisier up here than it generally is in the telemetry unit, but the nurses have all been great.
We were supposed to get her 1st meal (1/3rd her calories, at a 3:1 ratio) right after arriving in our room. But the dietician ended up not getting it to us until 4:45. Our girl was NOT a happy camper. But she eat her tiny meal and then fell asleep at about 6:00 for a couple hours.
She woke at about 8:00, ready for her 2nd keto meal (also tiny) and was up for a play time. I had *JUST* gotten her settled for the night when the nurse came in to tell us we were being bumped into a double room because they needed the single for an RSV kid who was being admitted from the ER. *SIGH* What can you say to that?? So now we're all tucked into our new room, Lily is asleep (again, hopefully for the night). She took a while to coax back to sleep, but seems to be resting peacefully for now.
(Our roommates, while VERY nice and sweet, are not super considerate. They have the bright lights on (at midnight), loud toys & TV, and the mom keeps talking to me! Not the worst thing in the world of course (and at least she's really nice), but dude. It's after midnight. TURN YOUR LIGHTS DOWN. Ah well.
If you can, please spare a good thought or prayer (whatever is your choosing) for my grandmother. She's nearly 80 & in the hospital pretty sick. There is some concern of lymphoma & she has a surgery in the morning to remove/biopsy some lymphs. [worry]
Off to bed now. *YAWN*
We were supposed to get her 1st meal (1/3rd her calories, at a 3:1 ratio) right after arriving in our room. But the dietician ended up not getting it to us until 4:45. Our girl was NOT a happy camper. But she eat her tiny meal and then fell asleep at about 6:00 for a couple hours.
She woke at about 8:00, ready for her 2nd keto meal (also tiny) and was up for a play time. I had *JUST* gotten her settled for the night when the nurse came in to tell us we were being bumped into a double room because they needed the single for an RSV kid who was being admitted from the ER. *SIGH* What can you say to that?? So now we're all tucked into our new room, Lily is asleep (again, hopefully for the night). She took a while to coax back to sleep, but seems to be resting peacefully for now.
(Our roommates, while VERY nice and sweet, are not super considerate. They have the bright lights on (at midnight), loud toys & TV, and the mom keeps talking to me! Not the worst thing in the world of course (and at least she's really nice), but dude. It's after midnight. TURN YOUR LIGHTS DOWN. Ah well.
If you can, please spare a good thought or prayer (whatever is your choosing) for my grandmother. She's nearly 80 & in the hospital pretty sick. There is some concern of lymphoma & she has a surgery in the morning to remove/biopsy some lymphs. [worry]
Off to bed now. *YAWN*
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