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February 26, 2019

Last night while sleeping, Julia's heart rate was dropping down into the 60s.  It happened several times, and they're not sure why.  Before the nurse could even get in, it would already be back on the way up.  As a test, they skipped her 6am Propranolol dose; they want to see if that can fix her heart rate issues but not raise her BP.  So far the BP is holding steady at 116/71, but her heart rate has been in the 150s-170s all day.  It was even in the 190s for a bit while she was agitated.  

So they're doing some tests with the medication to see if that's possibly affecting it.  They have other BP options if that's the case.  They also say it might be the chemo or withdrawal.  But they had to say it could also be the cancer =( That really took the wind out of my sails today.  I've just REALLY clung to good news this last week... even the hint of bad news really puts me down.  So I was pretty bummed for a while after I got here and Reed told me that.  He says no one is concerned, but I read into everything.  Usually negatively, if I'm being honest. Her other stats are great though - oxygen saturation remaining high 90s/100, and ET is 30s/40s (which is perfect).  And her MRI will likely be next week.  We're all very anxious to know what's going on.

The nurse tonight looked at her PT/OT schedule, and saw that they have a note in there that they will be coming once a month!  How useless is that!?  So she said she's going to specifically check with them tomorrow morning when they're in and find out what's up.  It's almost like they didn't think she was a candidate for PT after doing their range of motion test on Friday.  Which is stupid.  At least come in and stretch her limbs or something for 30 minutes.

Our work situation requires that Reed stay here and I don't (we just simply can't afford to lose two incomes right now, especially while she's somewhat stable).  And I'm OK with that... but sometimes I wish I were here just to get things moving.  That's definitely my strength, where Reed is much more laid back.  The nutrition still hasn't been changed over, and I'm not happy with the PT notes.  I'll need to get down here during the day this week.  (And our insurance issue has not been resolved yet - and I just got a call from collections about our initial ambulance ride.  All these bills SHOULD be covered - I just need time to gather all the paperwork and give good info to the social worker.)  We'll get it all sorted out.  Just slightly frustrated with it all today.

LOTS of people responded to my laughing/crying comments last night, and said it's a well-known after effect of a stroke - where the emotions kind of get mixed up while the brain heals and re-wires.  So that was really great to hear that she is not likely upset when we are just starting to make her laugh.  Reed did get the chance to ask our neurology team about that today and they agreed =)  So I did the same stuff tonight (silly noises) and got a few one-motion possible-giggles out of her.  

The BIG NEWS today is Reed finally got to hold her!!!  She showed some discomfort getting from the bed to his arms, but not nearly the amount she showed 1.5 months ago when he held her last.  It took about 10 minutes to get her in a comfortable position and get her heart rate to calm down (from the 190s).  We think her spine was just in a bad position until we got some bolsters under her.  But once she was comfy, she was COMFY!  We sang songs to her, and she mouthed "more" after every one.  (That's why this post is so late - I sang Itsy Bitsy Spider 5,000 times!)  She finally lost the battle and is snoozing HARD in daddy's arms.  ...Reed is also having a hard time staying awake with such a warm baby in his lap =)   If he were sitting in a recliner, he'd be out now too.  As of now, he's lost all feeling in his left arm and he couldn't be a happier papa =)  Her heart rate is nice and low and she's catching some serious flies with that zonked-out open mouth.

And in the video clip I got her wiggling her right foot (which we've seen a few times), but we even have the SMALLEST MOVEMENT in her left toes!  I don't even know if you'll be able to see it once it's compressed or whatever Facebook does.  But it's there!  

So I'm trying to just be SUPER HAPPY that she's doing so well, and not obsess over whatever this heart rate thing is that's going on.  



YouTube video for non-Facebook friends: https://youtu.be/M2lE3l2ZfPU

. . . ******************************** ********** Official Links *********** (These are here because of scammers) ********************************


Julia's *only* website:  juliaadamscancerfund.org Julia's *only" Facebook page: facebook.com/JuliaAdamsCancerFund Julia's *only* GoFundMe:  gofundme.com/juliasfightagainstcancer Julia's *only* official fundraisers:  T-shirts - https://bit.ly/2MQc0lF | Jewelry: https://etsy.me/2E1mR8i Where I buy Julia's CBD Oil (CBD BioCare 3500mg bottle): www.naturallywellforlife.com || Coupon code: danaboyd


If you're new and want to know what's going on, my first post about Julia was on October 31st. You can find them all on my Facebook page or Julia's website <3






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Meet Julia Adams
I'm 3 years old and I have a rare and serious form of childhood bone cancer. I'm doing my best to beat it, but my family needs your help!