OCTOBER 28, 2020


Before we left last night, they got Shaylyn’s feeding tube in. The medical name for it has the word bowel in it, but the short of it is, it’s how she’ll get some form of nutrients in her body. Eric’s afraid she’ll come out of here looking like a skeleton.⁣⁣

This morning Eric had to do one of many hard things this trial will bring: withdrawing Shaylyn from school. She’s worked so hard, especially in her art class. This step was even hard for me to bear.

⁣⁣I’m struggling already today. We haven’t even made it to the hospital yet. Everything about this is just so hard. I’m super concerned the other kids are going to feel we’ve cheated them somehow. Zach didn’t even want me to leave him today. ⁣⁣

At the hospital, we received some bad news, but also some good news. They ran a test to see if they could get Shaylyn off the ventilator again, but again, she only tolerated it for an hour or so. They may try again this afternoon. The good news is that she’s off the Propofol. One nurse calls it amnesia milk. They’re also trying to get Shaylyn off of the Fentanyl. The hope is if we can get her off the narcotics, she may wake up enough to breathe on her own. ⁣⁣

As far as movement, she responded well to the doctors. Even putting up 3 fingers at one point. She even wiggled her toes on her right foot. She couldn’t do it on the left foot and she’s still a little sluggish on that side, but there’s still progress.⁣⁣

The morning is fairly uneventful. We are on a video call with Ailey at one point when Shaylyn has one of her fits. These fits are a blessing and a curse. We get to see her beautiful eyes, but we can also tell she’s in a lot of pain. When the fit is over, Ailey asks to see her sister and she was able to see her sister with her eyes opened for a minute. ⁣⁣I was never sure if sharing pictures and videos with Ailey was a good thing, but the social worker said it’s best to be upfront and honest with the other kids and the pictures and video seem to help Ailey. When I first shared a picture with Ailey, her response was, “She’s still beautiful.”⁣

Eric and I decided on the cafeteria for lunch. I didn’t want to run into the same fiasco as we did yesterday. We ate in Shaylyn’s room. Just as I finished, Shaylyn had another fit. And like I’ve said before, we like to hold her hands and talk her through them. I don’t know if it really helps, but she SEEMS to look for us and search for our hands.

My emotions are really on the surface today. I’ve managed to hold it together the past couple of days, but today I just can’t seem to do so. I need her to tell me she’s making her boyfriend drive out of his way to go get KFC with her. I need her to say she’s just going to hang out with her best friend, Ben* and when I ask what they did, the answer is really nothing. I need her to run into a creative block when deciding what to draw, but turning down every suggestion I give her.

Lex is asking if he can go ahead with the small Halloween party he and Shaylyn planned to have. I really want to say yes, but I worry about the logistics of it.

After another one of Shaylyn’s fits, she’s slightly awake. Never for long and she can’t keep her eyes open, but while Eric was talking with her she managed to move her SQUOOSHY (I gave it a name), from one hand to the other.

Around 3, the Respiratory Therapist came and set up the test for breathing on her own. She’s doing well so far, even picking up again after a fit. I’ve tried to adopt a ‘sleep when she sleeps’ mentality, but it’s hard this afternoon as I’m praying and praying she’ll be able to breathe on her own for longer than an hour. Watching the monitor isn’t helping.

From the beginning, the nurses would mention how tiny Shaylyn is, but that she was super strong. It’s sad that one of the things she wished people really knew about her is being discovered this way. “Though she be but little, she is fierce” may just have to be the theme for Shaylyn’s life.

She made it almost 3 hours breathing on her own! She had a few tough times, but she did great. She’s been moving her hands a lot today. She brings her right leg up with every cough, but the left leg doesn’t really move.

Eric noticed the dinner being brought tonight on our doorbell cam and said something about ice cream. Shaylyn instantly opened her eyes. It was such a fun thing to witness. Even if it was brief.

She had another horrible fit and I could tell she was crying. Her eyes just pleading for help. These times make my heart hurt so much. There’s literally NOTHING I can do to ease her pain. The one good thing from this fit was that she finally moved her left leg.

We’ll be leaving again soon. This part of the night is always the hardest. I feel like I’m abandoning my child and telling others to deal with my child. I didn’t even like leaving my babies in the hospital nursery. Logically I know I can’t take care of her right now and that she’s in good hands, but a part of me still feels like I’m failing her.

***Name Changed to Protect Identity

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