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February 27, 2019

Julia did not have a great day today (symptom wise, not concern wise).  She threw up a LOT this morning.  And it has to be miserable x1000 because she can't turn her head, or really even control her reflexes... so she just barfs into her mouth and has to wait for someone to suction it out.  Ugh, it makes me feel awful thinking about it =( Luckily with the trach in, and the cuff inflated, there is no concern about it going into her lungs (another great reason to have the trach I guess...) but it just has to suck really bad for her =(

They now believe that the vomiting, in combination with the elevated heart rate, is likely due to withdrawal.  They are really working to wean her off all the hardcore meds she's been on, and they think it might have been a bit too fast in combo with the chemo.  So they're stepping it back and making sure she's comfortable.

Her heart rate has been in the 160s/170s all day.  It did drop unusually low (for her) several times last night, but this time only got to the 80s, not the 60s.  They said normally that wouldn't even be a blip, but just with everything that's going on, and that it's not her norm, they are keeping a close eye on it.  So they're still holding one BP medicine, and her BP is staying great at 111/74.  Other stats are totally fine.  

After her hours of vomiting this morning, she is just exhausted.  We've gotten an open eye, some hand wiggles, and some tootsie wiggles, but she's just been OUT.  She finally got comfortable as the day went on, so we all agreed we didn't want to disturb her by picking her up again (as wonderful as it was!) They just want her to rest and be comfy, so that's what we're doing.  Hopefully tomorrow we can get some more snuggles <3 

I've been working with an AWESOME nutritionist, recommended by a friend, and I feel SO GOOD about her expertise and the direction we're going to go.  She specializes in cancer (with specifics for both while on and off chemo), as well as brain injuries... so she's like, the most perfect match ever for Julia.  She's so excited to work with Julia, and her confidence really lifted my spirits.  So we have a formula picked out specifically for while she's on chemo, and then we'll be switching to one of the more popular 'healthy' formulas for when she's recovering (Kate Farms).  We're also going with a few trans-dermal patches to try to get some vitamins into her effectively (she's confident they're all 100% chemo safe, and our pharmacist just needs to confirm).  She's donating all her time for free just because she feels so passionate about Julia's situation.  The kindness and generosity we're experiencing from everyone is just so wonderful.  

I've requested that our social worker (who is fantastic) get in touch with PT, and if they aren't interested in working with Julia right now, that they at least give Reed and I an official daily regimen.  Reed and I (and Charlene especially when she visits) do work with Julia as best as we know how - moving her arms and legs, rotating her joints, etc.  But we're hesitant to move her neck or anything remotely touching her spine.  We also don't move her left arm.  After the stroke, a sign went up in Julia's room explaining some sort of left arm/shoulder complications to PT - something about the shoulder socket being... uh... now that I'm typing I can't remember.  Something about the shoulder possibly not being able to support the arm after the stroke?  Or at risk of coming out of socket?  I don't know.  My point is - the last time PT was 'officially' involved, they had neck/spine/left arm restrictions in place, and we've not heard otherwise.  So we'd like to get their expertise on exactly what we can do without causing harm, and then we want to do it until she's a good candidate for their sessions.

(And I don't personally find it a very interesting talking point, but since people ask, I finally have all my billing paperwork together and am meeting with the social worker on Friday.  She also got a case manager involved who specializes in insurance complications, so she's taking over this ambulance bill that's sitting in collections.  Just a HUGE weight off my shoulders!)  

In non-medical news... Reed is having a battle with a jar of salsa this evening.  I brought him chips and salsa, but he can't get the salsa open.  He refuses to run it under hot water because... Well, I don't know why.  He says this is no longer about the snack; it's about winning.  He tries every 20 minutes or so to get this jar open and it just won't budge.  He actually worked up a sweat.  Reed's a very special sort of person... I will update tomorrow on whether he finally had his chips and salsa or not =)

And along with the picture of AWAKE goof goof... (...I typed "goof goof" by habit, but then deleted it, but then decided to re-add it.  You're all getting to know her so well!  "Goof goof" is what Reed calls Julia the most, so I type it a lot to him.  Now you know!)  ANYWAY, in addition to goof goof, I included two AWESOME things!  One of Julia's new friends painted her this BEAUTIFUL canvas art that is just so perfect, with the most perfect tiger pacifier ever =) I love that it's actually her paci and not just a tiger... it's amazing!! And I don't know how many of you watch American Ninja Warrior, but one of the best-ever female contestants (Jessie Graff), who often dresses up as Wonder Woman, heard about Julia's story and sent her an autographed picture.  I hope she hears through the grapevine that OUR little Wonder Woman got it and we love it <3 <3 

. . . ******************************** ********** 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 - | 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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