Waiting on a Diagnosis

"He comforts us whenever we suffer. That is why whenever other people suffer, we are able to comfort them by using the same comfort we have received from God." 2Corinthians 1:4

No parent wants to see their children suffer, ever. There are times when we as parents would give anything to be able to trade places with our children. We want our children to be happy and healthy. When we as parents see our children in physical or emotional pain, we too feel it deep inside of us. A parent and his or her child are bonded in a way that the child's pain and suffering, becomes our pain and suffering. We want to shield our children from any physical or emotional pain that this earthly world often brings. Sometimes, despite our best efforts, there is no way to prevent the inevitable. When our children are faced with such adversities, all we can do is pray and be there for them. Sometimes that is the only thing we can do as parents. We must trust the Lord will comfort our children and provide us parents with the strength our children desperately need during their trying times.

Me and our girls April 2021

My last blog post, I left off with Mark saying good-bye to Justine and me in the Carrington Hospital. I will never forget it. Justine couldn't even stand, and she tried to get up out of the wheelchair and Mark embraced her so hard he lifted her out of the chair. He tried to hide the tears from her but could no longer hold them in as he hugged me good-bye. The Carrington ambulance crew loaded Justine into the ambulance, and I hopped in beside her. They took us to the airport where we boarded a fix winged plane. A lump in my throat formed and I fought back the tears. The last time I rode in an airplane like this was when I was life flighted by myself, pregnant with Kalli. Fear overcame me. I choked back the tears as I watched our 15-year-old daughter being loaded onto the airplane via a stretcher. I exchanged a glance with the EMT whom Mark and I knew so well. He gave me a quick hug and said he'd be praying for Justine. The tears rolled down my cheeks as I boarded the plane.

Justine being loaded onto the airplane

While we were ready to take off in the airplane, I was allowed to make a quick phone call to Mark. Mark, Bailee, and Kalli were at home quickly packing bags for all 5 of us. As I was on the phone with him, Bailee was on the phone with my parents. They were in Fargo and Mark was going to pick them up on his way through, so they could all travel to Rochester, MN together. We said another emotional good-bye as the pilot stated it was "time to fly." The flight nurses were so kind and kept Justine and me so calm. They had to do neurological checks on Justine every 15 minutes and her right side was getting significantly weaker, even as we flew. I was terrified. As a nurse, hundreds of possible diagnoses were running through my mind. I was jolted by Justine telling me "Mom, stop being a nurse right now and just be my mom." That statement hit me like a ton of bricks.

We arrived in Rochester early evening of August 16, 2013. My sister Sheila and brother-in-law Ron were there to greet us. It was so nice to have family waiting for us. Mark, Bailee, Kalli, and my parents did not arrive until 1 am. When we arrived at Mayo, Justine's symptoms had not improved, but they had not gotten worse either. The doctor decided to wait until morning to do an MRI. They drew numerous tubes of blood and reviewed the CT scan that was done in Carrington. Around 1:30 am everyone went to a hotel and Mark, and I stayed in the same hospital room with Justine. None of us got much sleep. Justine needed assistance with everything at this point. Her right side was nearly paralyzed, she was so weak, and her right side was numb and tingly, she had a right sided facial droop, and her speech was weak and slurred at times.

On August 17, 2013, Justine had an MRI of her brain. It came back abnormal. The doctors decided that she needed a spinal tap, more blood tests, and a more extensive MRI that would include her spine. The doctors would come into the room and ask Mark and I to step out to talk . Justine was not amused and put a stop to that quickly. She told the doctors and us, "I'm a big girl and I don't need things sugar coated. Tell me the truth." From this point on, the doctors told all three of us the results of any tests. By that evening, Justine was exhausted from tests. We were told there was obvious spots of inflammation in her brain, and they started her on massive doses of intravenous steroids. She had the spinal tap performed, only allowing Mark to be with her as he had one done about 10 years prior when he was diagnosed with viral meningitis. They decided to do the other MRI the next morning due to her exhaustion and the need to start the steroids. At this point her symptoms were no worse, but they were not any better. The nurse in me was preparing for the worse but hoping and praying for the best.

Kalli, Mark, Justine, Bailee

On August 18, 2013, Justine had an extensive MRI of her spine that she made sure her Grandpa John accompanied her to. Thankfully, it came back normal. She received another high dose of intravenous steroids. Some of the blood tests that were performed to rule out certain viruses were coming back and so far, all of them were negative. At this point she could hardly move her right leg and her right arm was still extremely weak, but she could move it some. Her right hand, however, she couldn’t control at all. She was feisty and tried so hard to be independent. This, however, caused her a bad fall. Thankfully, she did not hit her head. Mark was able to pick her up and he made sure to scold her for not waiting for assistance. I was secretly pleased to see her independent attitude shining. I knew that her fight for independence was what was going to get her stronger.

Justine “earned” this sign on her hospital room door

Justine starting high dose IV Steroids

My parents decided to head back to North Dakota, as we did not have any answers and the doctors were anticipating up to a 10-14 day stay. They took Bailee and Kalli with them as school was due to start in a couple of days. Mark and I stayed back in Rochester with Justine. We were left with no car, but several restaurants were within walking distance, and we knew we could catch a cab or shuttle if we needed to travel further. We felt vulnerable, but at least we had each other. We needed each other for support for us and for Justine. We were hanging out in a hospital once again. It seemed we were nearly destined for this type of life. Bailee and Kalli had spent months in the NICU after birth, and now Justine was in the PICU at Mayo. Fear, once again, overtook both Mark and me. We had comfort in knowing that people all over were praying for Justine. But we still had no diagnosis.

Justine showing her facial droop