October 16, 2019
Rough night and morning, but she's much happier right now. She pretty much couldn't sleep last night. Heart rate was solidly 180. She'd fall asleep OK, but she was up every 30 minutes fussing and crying. That's likely due to her cold, and honestly it's probably due to Reed being back for the first time in a week. She was probably nervous to sleep and afraid he'd be gone! Whatever the reason, it was a very restless night. So of course she 'woke up' super grouchy this morning. The consensus is she is fighting a virus. She's negative for RSV and flu. The other tests are still pending. But just based on symptoms, it's pretty clear she has a cold. They did get some more blood just to check levels - they all look fine (but that means she got poked right in her poor little hand =( ... the downside of no longer having her chest port). No real fever, but heats up quick under one of her fuzzy blankets. She's had Tylenol throughout the day and it does a pretty decent job of making her temporarily comfortable. I believe she's been on her vent all day as well (rather than her HME) just due to her thickened secretions. They can do some breathing treatments and it just takes some of the effort away while she's sick. She's super cranky, and everyone is OK with that. They say a cranky immune-compromised sick person is pretty OK; they worry with they get lethargic. All three therapies did stop by today, but she was (finally) napping during one. The other two noted that the sessions went poor because she's not feeling well. I spoke with nurse earlier and made extra sure all therapies noted that Julia has a cold in their session report. I know her participation right now matters a lot for acceptance into acute rehab... and her grown daddy didn't even move for 3 days with this same cold! (I know people from DuPont and Good Shepherd read this! She has a cold - don't hold it against her!) But after some solid rest during the day, she woke up in a MUCH better mood. Heart rate is down to 150's, lots of cuddles and smiles =) She's being nice and playful. But she gets VERY upset if Reed is not within arms reach. As long as he's sitting ON the bed, she's the most content little girl.
. Oh, and yesterday we heard "No" three solid times, in context. We've heard it on and off before, but not three times in a day, and unmistakable. I can't WAIT for her to get tested for a speaking valve again! I SO hope she's a candidate. This little girl wants to TALK. And I can't remember if I said it specifically, but they are waiting for her to be "vomit-free" before trying the speaking valve due to the risk of aspiration (and then having a tough time fighting a possible lung infection with her weakened immune system). There is a small balloon on her trach - on the inside - that is kept inflated. I believe the real purpose is to make sure air supplied by the vent goes into her lungs, rather than up and out her mouth. But it also helps keep stuff from getting down into her lungs... like vomit. In order for a speaking valve to work, this balloon needs to be deflated (so air can escape "around" the trach, pass over her vocal cords, and make nose), which increases the risk of aspiration, especially if she's regularly throwing up. . Last night Reed was holding her and rubbing her head. I asked if he felt any hairs. He said she might have like, 50 stubble across her whole scalp. But there were some! And right now Reed's laying next to her in bed, and says, "If I look out across the horizon" (her bald head) "I can see little tiny itty bitty hairs starting to poke up all over." <3 <3 <3 <3 Video in comments - content Julia and bonus Gabriel clip <3
YouTube: https://youtu.be/CQcv6A29aGw . . .
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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