Kaylee Update

After I last blogged about Kaylee's situation, Steven told me they had a very rough night without me. :( Sometime around 3am, she finally had to be sedated because she was inconsolable. I headed over in the morning, determined to figure out a better night time plan.

When I told Brynn we were going to see Daddy and Sissy, she was so excited.

When I arrived, Kaylee was more lucid and less violent. She was still weak, shaky, and miserable though. I was glad to see she didn't seem to be a danger to herself and others anymore, but heartbroken to see her in such a pitiful state. They had some theories of what was wrong with her, but still nothing concrete.

Kisses for baby sister! They were SO happy to see eachother. With some help, she was able to get up and play for a few minutes, but then was too weak and miserable and had to go back to bed. :(

I talked to some people and worked out a better night time plan. They got me a discount on a hotel near the hospital and my family paid the difference. They allowed Steven to bring the baby in the hospital just to breastfeed. It was less than ideal and it was exhausting, but I was just happy I could keep both of my babies from crying for me for long periods of time. The next day, Kaylee was doing much better physically and could walk by herself again, but was still a little weak. She also had memory loss and was acting very immature all day.

So excited to be able to visit the playroom for the first time!!

The next day, they told us that their main theory was that she had a virus that spread to her brain and caused swelling. They believe this caused her to become very sick and have abnormal behavior, memory loss, and regression. But they also think there were some pre-existing problems, like possibly a sensory processing disorder, that caused the situation to be even worse than it would have been. (I have suspected this for a while.)

We are ecstatic that she's feeling better, but worried because she has absolutely no self control or sense of safety.
She's mentally a toddler, and we are worried that it's permanent.
She needs constant supervision because although she's not aggressive anymore, she does things that could endanger herself or others.

She started to sleep better, with a sleep aid (before, she would not even sleep at all without a heavy sedative, and had gone over 30 hours without sleep at one point). She seemed to be back to her normal self, for the most part, except she is prone to having episodes. During an episode, she may scream nonstop, try to drag Brynna across the floor by her leg, run into traffic, bite people, laugh hysterically for no reason, not make eye contact, talk in gibberish, seem disoriented and confused, etc. Basically, she's not herself. After a few minutes, she will either forget her abnormal behavior, or feel guilty for misbehaving and confused as to why she did what she did.

I'm still worried about her getting back to normal, but just taking it one day at a time, and feeling grateful that her life isn't in danger.
I shaved my head to make her feel better about not having any hair. :)

On the 6 day of hospitalization, we got the news that we are probably going home today or tomorrow. We were thrilled! Well, except Kaylee, who was attached to the playroom and her nurses by that time, lol.

SO happy to hear we will be discharged soon!
Kaylee gave Brynna her new teddy bear. :)
Kaylee is mostly back to normal at this point, but still has episodes now and then.

Just when we began to assume we would be spending another night, someone came to tell us we can go home! We went over a bunch of info on further outpatient treatment Kaylee had to receive and some precautions we would have to take. Then we were discharged and set off for home!! (Thank you to my mom for helping us organize and pack everything!)

Goodbye room!
We're outta here!!
Waiting for the car.
All ready to go.
<3

When we got home, she kept getting progressively better, but was still having episodes and taking HOURS to fall asleep at night (even with the sleeping meds she was on). We were afraid at first to go to the grocery store and swim lessons, but nothing too horrible happened. There were a few moments where she started acting like a 2 year old on PCP, but we managed to keep it from getting out of hand. We got a few stares and I had 1 person outright ask me if she had a disorder... Also had another person ask if we had cancer. But I couldn't care less what people think.

At the doctor's!
She was a little TOO behaved at the doctor and therapist, so I had to really impress upon them that her behavior comes and goes, and her sleep is terrible.

We're still deciding when and if she can go back to school. We just have to wait and see because there's really no way to tell how long these episodes will last. It's complicated by the fact that she is dealing with the grief of losing her Gigi (her great-grandmother, my grandma), and she was very close to her. It's so unfair that such a little girl has to deal with all these big problems at once. :(

I'm so grateful for the every day things now. Just seeing Kaylee pick out her clothes (and accessories!), paint, play with her sister, and just be a kid again... It's all I was praying for constantly during her hospitalization.
That's my Kaylee Baylee, finding a clever way to use hair accessories even if she doesn't have any hair!

I'm so glad to have her home again, I don't even care how exhausted I am from supervising her 24/7 and trying to get her to go to sleep for hours. I'm just focusing on the positive right now. All that matters is the progress she is making every day, even if some days it seems like 1 step forward and 2 steps back. Her determination has always been challenging when it comes to parenting her, but I couldn't be more grateful for it now, because I know it will get her through this.

Thanks so much to everyone for the support, prayers, food, and well wishes. It means a lot to us. <3

Comments

mail4rosey said…
You seem like such a kind and compassionate momma!!

My prayers and a million good thoughts too are with you. I know it's hard when it's your baby.

Hugs from one mom to another.
Susan Cook said…
I'm glad she is home - where you can take care of her. Hope she continues to get better & better :)

kudos to you for shaving your head! that is super special!

Thinking of you and your family :)
Carrie said…
So glad she's improving! Continued prayers coming your way for a full and speedy recovery!
Veronica Lee said…
So glad she's home and improving. You are such a great mom, Cami.

Praying for you and your family.

(((hugs)))
Susan Struck said…
You have been through such an ordeal, and all while mourning the loss of your grandma. Please know that a stranger in Wyoming is praying for you and your family. God's peace to you.
Theresa said…
Awww, what a rough time you guys are having, but I am happy to hear you are home now and she is improving!

Big hugs to you all! I'll be keeping you in my thoughts.
Anna said…
So sorry for your loss.

I'm glad Kaylee is recovering and home. You are a strong mama and your daughters are blessed to have you as their mother.

Thoughts and prayers for you and family.
Adele Brown said…
I am so sorry for your loss, and the hard time you are going through. I am sending prayers your way for some peace. Thank you for linking up with the Mommy Moments Blog Hop!
Sorry for the loss of your grandma.

I'm glad you are seeing improvements and still pressing the doctors and caregivers! I hope and pray that everything continues to get better and better.

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