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October 21, 2019

It's been an extremely frustrating day. Well, the day was fine. I'm very frustrated now, after the fact, with how Julia's day went. Everything is fine, medically. She had to go back on her vent rate last night because she was a bit apneic (5-6 breaths per minute) possibly due to Ativan + Benadryl combo. But she's been on her HME all day and did great. She was grouchy in the morning, but she's doing better now after a nap. A 7 hour nap. She slept from 1pm - 8pm. So she missed all her therapies. Again. I'm at home tonight doing laundry and cleaning the kitchen for the first time in 3 weeks. And I'm just so annoyed. But then I don't even know if I should be annoyed, because I have no idea what the 'right' thing for her to have done today is. Sick kids needs rest, right? But how much is enough? Is it safe to wake her up? Surely it's fine after a 3 hours nap? 4 hours? According to Reed, the nurse said she slept "relatively well" last night. Supposedly she went to bed at midnight and woke up at 9am. ...But then she took a 7 hour deep-sleep nap 4 hours later? And I feel like I'm the only one who thinks that this is indicative that she did NOT sleep well last night. And now she's just waking up at 8pm... what time is she going to go to sleep? 6 in the morning? How on Earth is she going to be awake for therapies tomorrow? When does this cycle end? I feel like I keep getting "a plan" from her team. Electronics off time, lights off time, solid sleep, wake up time, therapy time. Wake her up for therapies if required. Do our best to get her to cooperate. Get her used to being up and about during the day. Get her used to a schedule (by keeping to a schedule). But then it seems like these plans last 48 hours and then fizzle away. Last week she had a cold. I get it, let her rest. But she's over that. And they aren't concerned or they would have drawn blood to check her levels. The problem, as I understand it, is our insurance is going to determine in about 2 weeks that she no longer needs to be at CHOP. She will be far enough off chemo and she's medically stable. They're not going to approve her fancy PCU room any longer. The goal (well, I should say "my goal" since I no longer think other people share my goal) is to get her into acute rehab for 1-3 months. Look at how far she's come essentially on her own. She could blossom in acute rehab. She could learn to sit, and stand, and walk, and play. But she needs to qualify for acute rehab. And that is done through reports that say she is participating in her PT. She needs to prove she can handle 3 hours a day, 5 days a week. And that needs to be getting documented like... right now. But all I keep hearing is, "Oh well, she was sleeping. We'll try again tomorrow." They don't tell us their schedule. Reed has asked when they'll be by, and there is no time slot. It's "sometime today". How is he supposed to wake her up, and have her ready to go, if no one knows when they're going to show up? And he says sometimes they don't even come in the room! They just look in or talk to the nurse, find out she's sleeping, and just leave! And NO ONE came in today. Did all three therapies individually decide it's not even worth trying to wake her up? We want her to go to DuPont. It's a beautiful facility and it's not 1.5 hours away. But DuPont needs proof of her ability first. At this rate, that's not going to happen. I have no idea if Good Shepherd will take her without a proven record. Maybe they will. Maybe CHOP knows this and doesn't really care to meet DuPont's standards. I already know there's some weird animosity between the hospitals, so it wouldn't surprise me. But if Good Shepherd won't take her either, then she goes to a transitional care home. Our house is not ready. Home nursing is not going to happen in two weeks (it might not happen ever, according to people who live this life). Reed is unable to stay with her at the transitional care facility. It's far away, and she will be there mostly alone. All day. With no acute rehab. That will be her quality of life until "everything falls into place" and we get her home. Which realistically could be a long time. OR, she could get into acute rehab, do a crash course in building her strength and stamina, learn how to sit and walk and play again, and possibly get this trach out earlier than never. Once the trach is out, nothing is preventing her from coming home. And RIGHT NOW is the time to prove she can handle therapy. But "she's sleeping". I'm not at the hospital during the day. I work. But this just isn't happening and we're running out of time, so that might need to change. Making sure things get done is not Reed's strength. So tonight I'm going to figure what I need to do to make this happen. Ideally, between Reed and her team, enough people are involved to wake up a toddler and record that she participated in a tea party. ~~~~ Other than being extremely frustrated at the apparent lack of interest in her rehab candidacy, Julia's been happy this evening after her "nap". There's a cute video in the comments.

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

Julia's official pages:

Facebook: Julia's Fight Against Rare Cancer - Fund

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. You can find them all on my Facebook page or Julia's website <3

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