Hospital 🏥 Day 20 Update

 

Elevated sodium levels can cause brain swelling. Although CT scans and a MRI were done and didn’t show anything newly abnormal, Mini Mayhem’s sodium level being so high did affect her brain. Since her sodium level is now normal, her respiratory issues (pneumonia) have improved we are now seeing the neurological consequences. Her second night on the floor from PICU she had an increased heart rate, increased respiratory rate, sweating and agitation. For this reason, she was transferred back to the PICU. After receiving valium, she continued to have these symptoms and received a dose of dilaudid (a pain medication) and she finally calmed down. This happened one other time in the PICU. She was then sleeping most of the time, so they moved her to IMCU (Intermediate Care Unit) and she continued to just sleep. Yesterday, we moved to the Neuro floor and last night she became agitated, respirations and heart rate increased and she was sweaty. Thankfully, ativan calmed her and she has been less restless when awake but sleeping most of today.

She cried for the first time last night. It’s the first time I have heard her cry since being sick and it was bittersweet. Also, her eyes became misaligned, and it lasted for a few hours. This is called strabismus. Strabismus is when the eyes don't align to look at the same object, causing one eye to turn inward, outward, up, or down. When she moved her eyes, they did not move together. Her eyes were doing this:

She is still holding urine and having to be cathed and they spoke to potentially having to do this at home if she doesn’t start urinating on her own again. 😭

Kidney labs look decent, so Karla is hanging tough. 💪

The symptoms she was having with her heart rate, breathing and sweating is likely neurostorming. “Neurostorming, also known as paroxysmal sympathetic hyperactivity (PSH), is a medical condition of exaggerated sympathetic nervous system responses. The body's "fight-or-flight" response becomes hyperactive and dysregulated that occurs after a severe brain injury. It involves a malfunction of the autonomic nervous system (ANS), which controls involuntary bodily functions. Involuntary body functions are automatic, unconscious actions like breathing, heart rate, and digestion.

Neurostorming is characterized by episodes of increased heart rate, blood pressure, breathing rate, and body temperature, often accompanied by sweating and abnormal muscle posturing. Neurostorming can be spontaneous or triggered by external stimuli like touch or noise and is a potentially serious complication that requires medical management to stabilize the patient.”

The Neurologist isn't 100% convinced that this is what is happening but agreed that her symptoms fit and because most other things have resolved it could likely be neurostorming. Neurostorming can be temporary or permanent. At this time, there is no way to know which will be the case. Please pray that it is temporary. I have been told that this is often one of the last things to show up and when temporary, it can take days, weeks or even months to resolve. It is an awful thing to watch her go through. 

It’s been a pretty emotional morning for me, taking in the new information and so desperately wanting my girl back to her normal. The Neurologist mentioned getting another MRI and this time with contrast. Nephrology had already said that he felt that since we were passed the acute kidney injury phase that it should be ok for her to have contrast. I NEED MY GIRL BACK!

Our experience here on the Neuro floor has been great and the nurses are wonderful. When on this floor in the past, it has always been five star, and it hasn’t been any different this time. I am ever so appreciative of that because it doesn’t add extra worry to an already stressful situation.

I stole this quote from a friend who posted it today and it is so very true…..not just praying for me but especially for my girl. THANK YOU! 💜