It’s been a long week here in the PICU. We are happy to have Emmy monitored so closely by the doctors and nurses. Their collaboration with each other, and me, is truly EMMazing(😉).

Updates:

Emmy is doing great off the ventilator, she is becoming more alert and oriented every day.

She is experiencing something called ICU delirium- which for her is confusion and restlessness at night. We will be trying some new medications tonight. Fingers crossed everyone gets some sleep.

Emmy had 2 MRIs yesterday and a Lumbar Puncture.

The first MRI was to see if the fluid, that was previously found on her spine, improved enough so they could go forward with a lumbar puncture to confirm if her seizures were caused by meningitis.

The second MRI was of her brain to check the status of the swelling that they initially saw on the MRI after the seizure.

Both MRIs showed resolution of both issues. The lumbar puncture was able to take place, and so far the result’s are negative for meningitis and they have stopped her antibiotics. All of which confirms that the cause of Emmy’s seizure was PRES.

“Posterior reversible encephalopathy syndrome (PRES) is a rare neurotoxic condition that can occur in children with leukemia undergoing treatment. It's also associated with reversible vasogenic edema and has a unique appearance on radio imaging”

“Common symptoms include seizures, hypertension, and altered mental status.”

Due to PRES, Emmy has needed to be on a blood pressure medication through her IV for several days. We cannot leave the ICU until she is off of the medication. They have successfully weaned it down, to about half of what it was last night, during the day today. The plan is to start an oral blood pressure medication at 6pm tonight.

The other issue we are still working to figure out is Emmy’s consistent abdominal pain.  Every test she has had has been negative. The only thing left to do is a scope of her GI tract. The GI will decide if that’s needed early next week. For now, we are on a low fat and gluten free diet.

We remain on a chemo hold as her team wants to make sure Emmy has a full recovery from the stress of the seizure and the ICU before we introduce any more chemo. They are also considering flipping around the standard treatment phases to give her a less intense phase, this will give her nervous system a rest. The phase she is suppose to go into is a lot of lumbar punctures with chemo into the spinal fluid.

Emmy has had a busy day today, she worked with PT/OT, music therapy, art therapy, child life, and is giving the nurses tattoos. We love to see her smile again and enjoy the little things.

Brooklyn was able to visit yesterday thanks to a good friend and the girls babysitter, Jessica. We both miss Brooklyn SO much, but she is being well cared for and is safe.

Nate will be going home tomm to be with Brooklyn for the weekend, and show our support for Kinsley at the lemonade stand!

I will be nervously at the hospital alone, but happy Nate and Brooklyn can be together.

Thank you, as always, to everyone helping us through this very difficult time.

❤️Emmy’s Mama

P.S. earlier this week I received an email from a man named David, who runs the ‘discovering Grayslake Podcast’, asking to lend us a hand and support our family as their June Fundraiser. We were referred to him by Emmy and Brooklyns dance teacher at  Dance Connection in Grayslake.

With my acceptance, they have planned a 90’s night on June 27th at First Draft in Grayslake. I will post more information about this next week!

So very thankful for our community!