December 13, 2019
Julia's had a pretty good day =) Her vitals are all decent. Breathing support is back down to minimal on the vent (she hasn't been off the vent since being moved to the PICU a month ago, so that's her new norm). She's continuing to tolerate all her chemo meds just fine, so they're back at full dose. The PICC line has been out since yesterday. No visible improvement in her balloon hand, but they said it could take a few days. She hasn't had any control of that arm for many weeks now. She was on her right side today and Reed propped that bad arm up on her hip just to give it a different position. But she wiggled and it flopped back down to the bed. She O-faced and then laughed... so apparently that's funny! The drain for her pleural effusion has been clamped since yesterday. The 'plan' (not like anyone can have a plan with Julia) is to keep it clamped for a week-ish and see what happens. See how much fluid accumulates in a week. They can just un-clamp it at any time to drain some more. But she has only needed Tylenol twice in the last 24 hours for pain control; hardly no Morphine since this procedure. I'm super happy about that... but I do feel like I had to push more than I'd like to. I've been insisting for a week that her increase in pain was due to this fluid. As this was exactly how she acted, physically and pain-wise, right before it was drained last time. I've told several nurses and doctors that this was bothering her, but they kept insisting there wasn't much fluid there, or that scans showed it wasn't a 'drainable pocket' this time, or that this condition isn't painful. Yet here we are (again) with an immediately more active Julia who is not needing Morphine around the clock. But I guess whatever. It's taken care of and the new drain is a more permanent solution. Her face swelling has also improved from the last two days. She's mostly back down to her normal chunky self. Slight water retention, all over, in my opinion. But I haven't personally spoken to a doctor in about a week to confirm that. I diuretic is possible, but they just don't want to add that to the mix with manually draining off fluid / allowing her arm swelling to resolve. Nothing is urgent, all organs are functioning fine, so they're just giving her some time to even out. Not a bad day at all for Julia. ~~~~ But an awful day for me! I thought I was on the tail-end of my cold. Nope! I had a fever all morning and I just feel awful. I started with a sore throat 5 days ago, but the cold still seems to be in full swing. Apparently no amount of vitamins, elderberry, zicam, teas, and other miracle cures, can outweigh the damage stress causes to your body. I used to get sick like once a year for three days, and now if I even see someone sneeze in the same room as me, I'm sick for a week. The super frustrating part, is this is all because I wanted to be there for Gabriel who was miserable and crying for his mommy. We were told he "just" had an ear infection, from the cold he had a month ago, so I figured the risk was minimal. Having actual regret about comforting your sick toddler is a super bad feeling. I haven't seen Julia in five days, and I haven't physically touched her in a week; and now that I had a fever today, it's another 48 hours until I can consider visiting... and that's assuming my fever isn't back over the weekend. Holding Gabriel while he was sick just wasn't worth it... how awful is it to have those feelings? And those thoughts make me compare the differences again between dealing with these things as an adult, and as a naive child. In addition to having a cold, I'm super stressed out missing her, and feeling guilty, and wondering what percentage of her remaining days I just lost by seeing my other child, and wondering if "it will happen" while I'm stuck at home with a sore throat. And if I should just risk it and go see her, because it doesn't actually matter; or if I should hold out hope that she can beat this again, and keep my germs away... And meanwhile, she's laughing because her swollen, unusable arm flopped off her side and onto the bed. It's crazy what you consider a 'blessing' during times like these. But seriously, thank God she's so young and innocent. ~~~~ Pictures today: Gabriel taste-testing donuts yesterday and lining them up on the table. I mentioned we were all sick together yesterday, and I brought over donuts. I picked a chocolate one to share with Gabriel, and went in the living room waiting for him to come sit with me. And he walked in with his own donut! I had no idea this could could climb right up onto the table and help himself. But he did, over and over. And props to Reed for tolerating my image requests. He doesn't understand this whole Facebook thing. He has no idea how popular Julia is. I asked for a picture, and he groaned, and I said, "Please make it horizontal, because I already added Gabriel's pictures and I have a horizontal spot left. And we'd all like to see her left arm, so make sure that's included". So he did it. He doesn't understand it, but he did it anyway. (This is really a big step for him!) I'll try to get this video uploaded from as well. Might take a few minutes.
YouTube: https://youtu.be/wIOA8yL8uxY . . .
********** ~~ Julia Adams ~~ *********** ************* Official Links ************* **************************************
Julia's official pages:
Facebook: Julia's Fight Against Rare Cancer - Fund
Julia's official fundraisers: Ornaments: https://etsy.me/2XAd8PP T-shirts: https://bit.ly/2MQc0lF | https://tinyurl.com/y55lh988 Jewelry: https://etsy.me/2E1mR8i Car Magnet: https://tinyurl.com/y4nxr3lr
Where I buy Julia's CBD Oil (CBD BioCare 3500mg bottle): www.naturallywellforlife.com || Coupon code: danaboyd
Chordoma Foundation: www.chordoma.org
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