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January 30, 2020

The day before the end of the month. 15 months in the hospital. You get to a point where you don't even want to think whole thoughts. Like, I can't wait for this hospital life to be over. But I know what it likely means when it's over, and I want to avoid that forever. So it makes me feel obligated to like this life which I very much don't. . Julia's had an OK day, no emergencies again. BP is... decent. It's been up and down today, but all within the bounds of normal/not-concerning. Most recent read is 74/39. Certainly on the low end, but not low enough to do serious intervention. Again, with fluid it came back up. No fevers since a few nights ago. Limbs are mostly room temperature, rather than freezing cold. The nurse thinks the leakage around her g-tube is slowing down today. They were having to change the pad every hour or so, but today it's been every 4 hours. However, they also stopped feeds yesterday for... I forget why. But I'm wondering if she DOES have a blockage, is the discharge slowing down simply because there is nothing going in? Her feeds go directly into her intestines rather than her stomach, but a blockage in her intestines could definitely back everything up. The x-ray yesterday showed no obstruction, but I understand that's not a perfect method of detection (according to parents who have been there). While the chemo has a chance to do its thing, the real head-scratcher continues to be the stomach rash. Infectious Disease stopped by again just to look at her. They have no clue. Dermatology looks at it, neurology, oncology, PICU, everyone... I have a list of notes to go over with things it might be, with still the most common suggestion being this hard-to-detect/hard-to-treat yeast. She's been treated for yeast, twice, with no results. Given the non-response, and negative blood/urine cultures, CHOP is leaning toward it NOT being yeast (understandably). But it's hard to ignore the personal stories I keep getting of a very similar thing happening (distended stomach, rash, BP issues, negative cultures) and it turned out to be a major yeast infection. So... still trying to get whatever answers I can on that. Since we're sort of crowd-sourcing rash information, here is what I know: - It blanches when touched - It is not raised, textured, or warm - It started as a circle around her belly button (not near any tube) - It started before any tape / new padding was used - It started before all this new medication was introduced - It started before her abdominal drain was put in - It is slowly spreading outward in all directions - Infectious Disease says nothing about it appears infection-related - Dermatology has no idea what it is - Her g-tube was not leaking, even a little, when it started - The materials on her stomach have been used for over a year with no issue / they are also currently used around her trach and there is no redness there - Several rounds of 8+ antibiotics / anti-fungals haven't affected it - Hydrocortosone cream hasn't affected it - Lotion hasn't affected it - Staying clothed/un-clothed hasn't affected it - All blood work and swab cultures have been negative - Chordoma can rarely present as skin lesions, but Dr. Google shows me they look very different than this rash (more like isolated blisters) - Her chemo can cause a rash, but it's full-body and looks different I wanted to get some of my questions answered by a doctor to provide a better list, but they haven't stopped by yet. So this is what I "know" as of now. The biggest concern today is her urine output is continuing to slow down again. The last two days it's been about 5-10ml per hour. They want to see 14-20ml. Today it's closer to 5ml. They're discussing what to do. Not urinating is obviously very bad. Urine stopping for 24 hours is the symptom that led into her septic shock episode the other week... so we'd like to get that production back up. . Other than medically, she's had a few instances of good, intentional eye contact today. And definite mouth movement. And while getting a trach change, she even vocalized just a bit. They deflate the cuff during a trach change (the cuff prevents air from entering the upper airway/mouth, and has been more inflated lately to keep the vent support in her lungs where it needs to be). So since it's deflated, the opportunity to make sound is there. She used to vocalize a lot, even around the cuff, but that stopped many weeks ago. This is the first time anyone has heard her in a while. It was just a grumbling noise, but her new nurses called her 'feisty'. They don't even know! ~~~~ Pic tonight: Julia and Gabriel received some super cool hand-painted shoes from a Facebook friend. Gabriel saw them over FaceTime and yelled "Paw Patrol Shoes!!" Video in comments: just a short clip of her watching Peppa. I tried to get some good eye/mouth movement, but I don't think it's super clear. Bonus dancing skills. YouTube: . . .

*********** ~~ Julia Adams ~~ *********** ************* Official Links ************** ***************************************

Julia's official pages:

Facebook: Julia's Fight Against Rare Cancer - Fund

Julia's official fundraisers: T-shirts: | Jewelry: Car Magnet:

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

Chordoma Foundation:

If you're new and want to know what's going on, my first post about Julia was on October 31st 2018. You can find them all on my Facebook page or Julia's website <3

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