Fear Not

A dreary day here in Milan but thankfully we got a ride to the hospital because we had to arrive by 7:30. We knew it would be the longest day of the trip, and that’s what it was. Long and hard.

Today was MRI day, not only that, but lumbar puncture, bone marrow aspiration and EMG. Thankfully all of this took place while sedated, but that is the worst part… for Ella anyway.

The tears started shortly after arriving and getting situated in our room at the day hospital. Thankfully some of the people we are familiar with which always makes it nicer.

Ella was first and got her IV placed for sedation. I don’t think it it so much physical pain but more emotional distress that disturbs her the most. We couldn’t understand what they remember or what really bothers them about the last ten years but I’m sure it goes deeper than we know.

It was a rather quick process this morning which we were so thankful for and shortly after taking blood, we went to the room that she so dreads. Lots of people and a room that looks just like an OR. In Ella’s words it’s “too many people” and that scares her. No matter how many times we do this, it seems to be the same outcome every time for Eli and Ella. Ella sat on the table to get ready for anesthesia and the tears started again. When she cries, it’s so hard not to cry with her, so I just cradle her with my tears falling on her. As her mom I hate this, but it’s so important to get the big picture of how MLD is affecting their whole body.

Thankfully she was out cold very quickly and I darted out to get some fresh air before heading back up with Eli and Hut. I only stayed to drop coffee Americana because Eli was doing just fine. Hut sent me a pic not long after, that his IV was placed with no issues and he would be heading down as well.

The MRI is about an hour but before that is when the procedures take place, so when Ella was off into the MRI, Eli was getting ready to be sedated.

Hut and I sat in the waiting room chatting with Miriam and waited for Ella. Just as I was wondering when she would be done, the doctor came out and she she was finished AND happy!!

For years, she used to wake from anesthesia angry, but today she was happy and wide awake. We went back upstairs and got her settled before I headed back down to wait for Eli. She had to lay there for a couple of hours flat due to the lumbar puncture which worked out great as Eli was now in the MRI.

His seemed to go quickly and when he was finished, I went back to see him. It’s so ironic how opposite they are, because as easy as Eli is going in, he takes so much longer and is grumpy afterward. Today was no exception.

When he was alert enough, we went up to his room which was next to Ella’s. By now she was having water and eager to eat. It took Eli some time to fully come back to himself and when he did, he was not too happy. We thankfully know how they typically respond to anesthesia so he had some water pretty quickly and some food not long after. He was not thrilled with having to lay on his back and the screaming baby a few doors down. By now, Ella was eating and eager to go “home” and then we found out we had to get a dexascan today before we left. You can imagine, they were not happy.

At 2:30 we pushed them down to where they do the scan and thankfully, it only took about 10 minutes each.

I feel that we did too much moving because Eli started complaining about his back and hip. After arriving back at the room, we waited about another hour until they took out their IV, then we headed back to the residence.

They are both in bed resting and actually Ella is asleep, so we are hoping this doesn’t completely mess up the night, but she needs to rest her body. Eli is still in pain in “his spine” as he says so we pray it eases up by tomorrow.

All in all, they are good, and we have to remain focused on the fact that being here is a blessing and a gift that many do not receive.

~ by Rebecca on April 20, 2023.

Posted in Along the way, Back to life and living, Diagnosed, Diagnosis, Life after diagnosis, living, Milan
Tags: anxiety, challenge, changes, clinical trial, day by day, eli and ella, Eli and Ellas Prayer Warriors, Enjoythemoment, family, Fear, gene therapy, grateful, gratitude, happiness, Hero, hope, journey, joy, learning, lessons, life, Love, memories, metachromatic leukodystrophy, Milan, MLD, MRI, never give up, purpose, rare disease, sorrow, special needs, strength, warriors