Janet’s Story

Site created on March 20, 2022

On Tuesday March 14, our Mom was admitted to the hospital. In the days prior she had been experiencing pain traveling throughout her body, weakness, and tingling in her legs and hands. Each day her pain and weakness seemed to increase, ultimately leading to her inability to walk. After several MRIs, countless blood draws, a lumbar puncture, and numerous tests it was confirmed that Mom has Guillain-Barré Syndrome (GBS)/ Chronic Inflammatory Demyelinating Polyneuropathy (CIDP), and Hyponatremia (low sodium in blood).

GBS is a paralysis that begins at the extremities (toes/feet, fingers/hands). The paralysis is caused by an attack by the body’s immune system on the myelin sheath of the peripheral nervous system. The paralysis can move upwards and throughout the body, temporarily paralyzing respiratory muscles.

Her first few days in the hospital were hell. She was in an excruciating amount of pain throughout her body. The pain medication was not helping her at all.

The key to treating GBS is to treat it as early as possible, in an attempt to limit the effects of GBS. Mom was started on Immunoglobulin Therapy (by IV) on March 16. On day 3 of the the treatment, March 18, Mom’s condition was continuing to deteriorate. Her speech was starting to become slurred and she was having a hard time swallowing. Doctors decided to move her into ICU to better monitor her condition. On March 19, Mom was in so much pain and discomfort that they started some morphine to relax her. Mom was still able to communicate but it was clear it was becoming more difficult.

The morning of March 20 Mom was unable to take deep breaths to administer respiratory tests. She also lost the capability to swallow. Doctors intubated Mom and placed her on a ventilator and feeding tube. They have her heavily sedated to relax her. Doctors do not think she has “peaked” yet and have mentioned it could get worse before it gets better. Mom is in a very critical condition. She can hear us, but not physically respond which is causing her anxiety and to become upset. At times when the sedation is low she turns her head from side to side or shakes up and down to confirm. (She shook her head when the nurse said she was probably swearing at her. And nodded when Krystal said she had to leave.) We are only talking positive to and around her and are trying to limit our emotions in the room because it makes her upset. Because of this and her compromised immune system we are not allowing any visitors while she is still in critical care.

We are at the hospital daily with Mom and tell her how strong she is and the army of angels that are praying for her. She will make it through it this. We will post our updates below. Thank you for your care and support and please continue your prayers for our family.

Love,

Harpo, Krystal, and Keaton

Newest Update

May 30, 2022

Journal entry by Krystal Mladic-Barz —

Mom has been making steady progress over the last weeks. We admire her dedication and determination 💛 Her positive outlook and tenacity. 


We now have a schedule for outpatient therapy. The appropriate medical equipment has been installed. A caregiver has been coming regularly and she is a fantastic fit for mom (and our family). 


Mom will be receiving a new brace for her right leg only. (Right leg is weaker.) The left leg brace will be removed. New leg brace will be more flexible. Current braces are firm. 


Mom has moved up to a 4-wheel walker with lock. This type of walker allows for more mobility and less dependency for balance. 


Strength/Muscle Weakness and Exhaustion are still very much present. Her voice has not returned, it has remained hoarse. 


Looking forward to an appointment with an autoimmune disorder specialist, with a focus on GBS and CIDP 🙌🏻


Focusing attention on Dad now . . . Paramedics took him to the ER Saturday, May 28th. Following testing, it was confirmed he has an irregular heart rhythm (A-fib). He was put on medicine, will require follow-up testing and an outpatient procedure (Ablation). He has been released and we will be scheduling with his Cardiologist following the holiday. 


(We do not know if he has always had an irregular heart rhythm or if at some point it was caused by something. The doctors also noted he should be tested for sleep apnea. “It is estimated that half of the patients with AFib also have sleep apnea. And patients with sleep apnea have four times the risk of developing AFib. Over time, untreated sleep apnea can lead to the onset of risk factors such as hypertension and diabetes that predispose a person to A-fib…”)


Good Website Resource for A-fib: 


Atrial fibrillation - Symptoms and causes - Mayo Clinic


BIG THANK YOU to Kendra, Tom and their entire family for quite literally running over to our parents house, regularly 😘 


BIG THANK YOU to Uncle Jim & Auntie Virginia for being with our Mom & Dad on Saturday, until I was able to get there ❤️ 


BIG THANK YOU to all the family members and family friends who have been reaching out and continuing to pray ✝️💟 Thank you is simply not enough. 


Mom and Dad like to keep an exciting life, keep us on our toes, but Keaton and I have expressed that they need to calm their wild lifestyle down for a bit . . . please?!?! 

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