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April 4, 2019

Not a good day today. I was on the way to pick up Reed and take him out for a few hours (for the first time since February I think): chiropractor, haircut, dinner, and some one-on-one time with Gabriel. But on the way to the hospital he called and said Julia was having issues with her blood pressure. Obviously we cancelled everything, and now we're just here with her... watching and waiting. ‍‍‍‍‍‍ ‍‍

Julia seemed fine all morning. The same nurse has had her for a few days, and she was getting pretty good reactions/interactions with Julia. She was playful, waving (mostly goodbye), and protesting during diaper changes. But then during a diaper change around noon, the nurse noticed Julia didn't seem to care. She was very 'blah', which is definitely not her norm. The nurse tried to kind of get her attention, shake her a bit, jiggle her hands... but didn't get much beyond a lazy response. So they took her BP and it had dropped to the low 70s/40s. Her heart rate had also climbed to the 170s, and her oxygen saturation was sitting around 90%. ‍‍‍‍‍‍ ‍‍

They gave her a fluid bolus (emergency dose of fluids) in case dehydration was the issue. She started to stabilize but then dropped again after 15 minutes. So they gave her another with the same effect. And finally a 3rd half dose. She ended up getting 50ml per kg of weight. If they had gone to 80ml, they would have sent her back to the PICU. They also gave her a stress-dose of steroid. This is just to help her body through whatever it's going through (such as infection, which is always a concern on chemo). With the 3 fluids and steroid, she has started to stabilize. They were taking her BP every 3 minutes, and now they're at every 15 minutes. ‍‍‍‍‍‍ ‍‍

As of right now (5:00pm), her vitals are: heart rate 167, oxygen sat: 98%, ET: 29, BP 105/62. ‍‍‍‍‍‍ ‍‍

They ran a bunch of tests: ultrasound of heart (I guess to check for dehydration), stool and urine, respiratory, and a million labs . Other than mild dehydration markers, everything has come back normal. No sign of infection (and no fever). They say dehydration can cause increased heart rate and lower blood pressure, so they're letting those interventions go for a bit and hope she evens out. In which case, it could be a combo of holding feeds (for procedure yesterday), and extra loose stools that caused some dehydration; and being weakened by chemo, she could just be extra sensitive to it. ‍‍‍‍‍‍ ‍‍

But all her teams were consulted as soon as she started having issues: neurology, oncology, and infectious disease. They reviewed her history, specifically with the oddly-presenting brain infection that lead to a stroke, and at this time, everyone is happy with the course she's on. They don't want to do more drastic measures (such as a spinal tap) unless they're needed. Her nurse was pulled off her second patient, so she's fully with Julia right now. And she's on a broad-spectrum antibiotic just in case, until those labs come back. ‍‍‍‍‍‍ ‍‍

They assured me that the PICU is only a dozen yards away, and if they hit the code blue button, they would be here in seconds. Ugh. I had even stopped posting her vitals the last few days because she had been so solid. Now every time I hear the blood pressure cuff go off (like now), I want to puke. ‍‍‍‍‍‍ ‍‍

So, that's that. She hasn't responded to me since I've been here. She and Reed are cuddling in bed and sleeping pretty soundly (that's the picture today). So I'm just watching her vitals and hoping they stay stable. The anxiety is pretty awful... going to be honest. ‍‍‍‍‍‍ ‍‍

(And I just tried to take my mind off of it by reading some emails, and I got a Google notification that 2nd Door Evolutions (the business I owned with my dad) has been marked as "permanently closed". That was sad to see =( I know I haven't processed that loss even a little. So right now, definitely not in a super positive place. Hopefully better news before 11:00 to share.) ‍‍‍‍‍‍ ‍‍

Update: ‍‍‍‍‍‍ ‍‍

10:15pm - They're still not sure what's going on. She stabilized for a while, with a heart rate of 150 and BP 105/63. She slept comfortably for a while, but they were still concerned at her lack of responsiveness. She eventually seemed to wake up, and started interacting as they've come to expect. Since being awake, her heart rate has gone up to the high 170s, and her breaths-per-minute is in the 50s (it's usually 15-20). So she's breathing really fast, but otherwise seems... comfortable. They're not sure what's up with that. (Video on Facebook - YouTube upload not working from hospital tonight.) ‍‍‍‍‍‍ ‍‍

So I guess... they're just not sure. No more tests have been run. They were happy with her improvement a few hours ago, but now it's different symptoms. Could just be the chemo, I guess. Oh, and she had two small spit ups this morning, and then a large throw-up about 30 minutes ago that got all over her right after a bath. So, unsure if the procedure helped. They're giving it another day. ‍‍‍‍‍‍ ‍‍

And her pretty eyelashes are almost all gone! I was hoping they'd survive chemo... but doesn't look like it. Her face looks more empty. Just not a great day in general for her. She just barfed again while typing this (and watched Peppa over the suction tube the whole time... no joke). Poor baby. She's so miserable, but she just wants to be a toddler so bad! ‍‍‍‍‍‍ ‍‍

Other than the recent barfing and the fast breathing, she seems pretty content right now. She's playing and smiling and interacting. ...Hopefully tomorrow is a better day for her.

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

Julia's *only* website: Julia's *only" Facebook page: Julia's *only* GoFundMe:

Julia's *only* official fundraisers: T-shirts: Children's Book: Jewelry:

Where I buy Julia's CBD Oil (CBD BioCare 3500mg bottle): || 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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