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February 2, 2019

Updated: Feb 3, 2019

Not a super great day today.  I think in this situation you cling to any small measure of hope, and then you have to digest the reality all over again when there is a setback.  Julia has been on a small amount of oxygen assistance, but yesterday she started to have trouble with her saturation.  They bumped up her oxygen from 25 to 35.  Last night she had more difficulty, so they increased it again to 45.  They've also put her back on ventilator assistance, where the vent is giving her a guaranteed 15 breaths a minute.  So this is the first time since coming out of anesthesia that she hasn't fully been able to breathe on her own.  And before, it was due to the procedure.  Now it's just... something she's no longer doing well.  The doctors say it could be a number of things, the cancer progressing, the chemo, or weening off of her sedation/pain meds.  Part of me believes they "know" what it is (the cancer), and just kind of throw those other small possibilities in there for our benefit.  Other than that, Julia's vitals are OK right now: heart rate high 130s, ET kind of jumping around 58-70, BP 109/69.

She's off all IVs.  Its weird seeing that big fancy piece of equipment all dark and empty.  The sedation and Morphine now go into her feeding tube rather than through the IV, which is just part of the weening process.  Still no one believes she's in any sort of pain... but you do have to wonder if we're getting to a point where she just wouldn't be able to show it.  They're confident we're not there yet.

Her left eye still reacts normally to light, and we're still getting the small mouth movement out of her when Reed gives her her medicine (it tastes bad and we like to believe she's protesting...) so that's a good sign I guess.  It's certainly not backwards progress.

It's just a rough day today.  Reed is more down than usual, probably partly because he was up all night while they were trying to get her breathing under control, partly because this isn't the direction we want to go.  I really rely on Reed's strength right now, so when he's having an off day, I have no chance.  I'm sure people reading back through all my posts see my tone all over the place.   

I've just been sitting her holding her foot, playing with her toes, and I keep thinking I feel her wiggle it.  But then I realize it's just her pulse I'm feeling.  Patience has never been my strong suit.. I know she's weak from the chemo, and tired from the RSO, and still on sedation... but I just want to see her open her eye again so bad. OK, enough of that.  In other news, our neighbor (who happened to be 3 doors down in the PICU) dropped off a foam mattress topper for Reed.  It's WAY more comfy than the couch, and he's slept really well on it.  His shoulder is pretty sore from the adjustment, but this is definitely an improvement.  I can't believe we didn't think of a mattress topper sooner.  

And Julia has a new nurse tonight, so when she did her regularly-scheduled 2 hour body adjustment/tilt, she put her fully on her side.  It was kind of alarming to see her like that, because she hasn't been on her side in MONTHS - since her surgery on November 16th.  But she called a few people in to look at it, and I guess everyone agreed it looks like a safe position - the mat Reed has under her head is really firm and the perfect height that it aligns her spine.  And while her heart rate was elevated by about 15 points for the first 30 minutes, it has come back down to her normal 135, so no one believes she's in any pain.  I like to think it feels SO GOOD to finally get off of her back!  

It's really nice to watch her sleep in this new position.  The first thing I did was give her a long hug and I got to touch her BACK!  It's crazy the simple things you don't even realize you miss... 

I was taking her picture just now (of her hugging her ADORABLE new elephant, wearing a new "Team Julia" shirt that you can't see, snuggled under a beautiful hand-made blanket in her favorite colors) and we were looking at her eyelids wondering if the swelling continues to go down.  And I joked, "Well in about 10 minutes a few thousand moms will take a look and let us know!"  That gave us a laugh.  We really appreciate everyone being so invested in her day-to-day... even the smallest health things like her puffiness and color.

And I'm happy to announce that my friends have done an amazing job putting together a Beef and Beer lunch and raffle benefit for Julia.  It's Saturday the 23rd in Downingtown (that's my hometown in PA, for Julia's new world-wide friends).  I'm not involved in planning, but I do know space is limited.  If you're interested, get tickets sooner rather than later.  I will be there, and my little man of course =) Here are the details they posted on the event. 


Beef and Beer - Fundraiser for Julia Adams

Hosted by Julia's Fight Against Rare Cancer

Saturday, February 23, 2019 at 1 PM - 5 PM

St. Anthony's Lodge 259 Church St. Downingtown, PA 

If you live near Chester County, PA, we'd love to have you join us for a fundraising event to benefit Julia Adams and her family!

There will be food, drinks, music, raffles, and a silent auction. We continue to receive donated gift baskets and vouchers from business all over the area, and they are pretty cool! Come ready to donate to a GREAT cause and hopefully win some awesome stuff =)

Amy and Gabriel will be there!

Tickets are $35.00 each. Kids under 12 may attend for free. Space is limited, so purchase early! Buy tickets @

Facebook event link: ---------------------------------------------  .



**************************** ****** Official Links ****** ****************************

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

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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