top of page

March 13, 2019

Julia had a decent day today - better than recent days.  Vitals: heart rate in the 140s, ET high 40s, BP 110/68.  She's only thrown up ONCE in the last ~24 hours.  It was a big one, but it was only once!  And it was mostly formula and snot (no blood).  So that's really really great.  Last night they doubled one of her meds for stomach irritation, and added another.  They're going to give that a few days to see what happens.  In the meanwhile, they are not changing her nutrition while everything settles down.

In the interest of being thorough, they did a head CT scan to check the shunt, and an upper GI study.  They said they looked for several (concerning) causes of bleeding, and everything checked out: the shunt is working well, her intestines aren't twisted, there are no blockages, and there is no obvious sign of bleeding (active ulcers or anything).  So everything looked totally fine, and they don't have an answer for where the blood came from.  They said it's super common to just get stomach irritation, to the point of some blood, from the chemo.  And blood in the stomach is very irritating, so that definitely could have been the cause of the vomiting.  (Just like many of her Facebook friends said yesterday - thank you!)

Since a CT scan was done, neurology took a look at it.  It wasn't a great image of the tumor, but from what they could see, nothing changed (good or bad) from the MRI last week.  So that's good - no crazy growth or anything, and no shrinkage is expected in just a week.  So all teams are happy with her current condition.

Julia has been WAY more alert today.  Reed has taken to call her "dramatic bug" because she really shakes her head no for... everything.  She doesn't like the suction or her meds or trach care or diaper changes... and she's making that well known!  She is a snot factory, and constantly has snot bubbles coming out her nose.  He will turn on the suction machine and she starts whipping her head back and forth.  The nurse said lots of kids just don't like the sound and the feeling of snot being sucked up.  It doesn't even enter the nostril, so I know it doesn't hurt (and they did check to make sure there is no redness or irritation in the nose - there isn't). So she's just being opinionated. (Which is great!)

PT hasn't really started anything this week due to the blood puking.  So definitely no stroller ride yet.  Maybe in a day or two if she stays better we can look into that.

We were told there was a room available in the PCU and that she might get moved tonight.  I confirmed it was a PRIVATE room, and they said it was a shared room.  I didn't react super well to that.  There's no way in hell Julia is sharing a room with another germy kid and all his germy family.  Not happening.  Not when they expected her to die 2 months ago, and now she's doing intensive, "high complication risk" chemo.  We don't let ANYONE see Julia right now - Just Reed, myself, and Charlene.  And even I stay home if I have the hint of a sniffle.  Flu precaution is going on here at CHOP now (limited visitation from December - April), with signs all over the place asking people to STAY AWAY if they're sick; yet every day, snotty coughing, nose-blowing people are all over the place.  Touching things.  Spreading their germs.  ...I don't trust another family ONE TINY BIT to put my child's safety above their own wishes.  Their child might not even be an oncology patient, and when flu restrictions lift in a few weeks, they could let an entire classroom come visit their kid.  Sharing our bathroom, touching all our shared stuff... Nope nope nope.

I told her we are just fine here in the PICU until a private room opens up.  The resident doctor seemed to hesitantly agree... I believe the hospital has the final say (unfortunately, but makes sense), but we've made our wishes on the matter VERY well known.  Last I checked with the evening nurse, they are currently waiting for a private room again.  I'm really glad she's stable enough to move out of the PICU, but I don't want them to rush her out and compromise her safety.

So hopefully that is not an issue, and she just gets moved when she has the proper place waiting for her.

So I did my first trach class today.  I had to practice on a nightmare doll.  Seriously... when they get worn out they probably go straight to Stephen King.  I don't know why they have to make them so awful! I should have taken a picture =) We went over how to clean the stoma and how to change the strings.  I practiced on a DOLL and I nearly puked.  Ugh.  So I guess we need to both earn a certain number of credits on Julia over the next few weeks - cleaning the stoma, changing the strings, suctioning, and listening to her respiration; until we're moved into the trach 2 class which I believe is learning to change the actual trach.  I'm sure Reed will have all his points in a week... he has no issues with it at all.  Gross gross gross.

That's all for today =) 

Oh!  The picture is showing her right eye NICE AND OPEN (looking at daddy of course!)  And you can see how it's kind of stuck forward.  Though the pupil DEFINITELY is starting to shift a bit left and right along with the other one =) No reaction to light yet, but super happy with the progress!

(Non-medical update: One of Julia's very kind and generous Facebook friends makes hand-stamped jewelry for good causes.  She's made beautiful pieces for Julia, and added a few more designs out of popular demand.  Her Etsy store is here [please don't feel obligated to purchase!  We've been the recipients of so much generosity!  But happy to share because they're beautiful <3 ] )

And the place I buy my CBD oil is having a 20% off sale for the next 4 days.  I am not affiliated with the company in any way, but I buy a LOT of oil for Julia, so I know how expensive it is.  So many people have asked me, and I want to share the discount info as well when I come across it:

. . . ******************************** ********** 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

372 views0 comments

Recent Posts

See All


bottom of page