It feels so good to be back to updating my blog. My last post was written by my amazing Mom, as I was very ill at the time.
A lot has happened since the last update… Things have been a bit crazy! Since my last post, I have been in the hospital yet again. My stay with the ileus was 10 long days. Thankfully my last stay was only two, but it was one of the most frightening experiences.
On Memorial Day I came downstairs feeling fine and normal. My wonderful home health nurse, Sarah, came to do my PICC dressing change. I personally am totally used to having my line cleaned and scrubbed. In a way it feels nice to have that area given a nice itch. Before we were even finished I was hit with an intense wave of nausea. My mom ran to give me a zofran, which I rapidly barfed up. Before I knew it my vision turned completely white and bright, as I felt tingly and numb all over. The last words I remember were “I’m calling an ambulance”. I only remember bits and pieces after that…
I opened my eyes to a cop standing in the dining room, hooking me up to oxygen as my Dad held my head up.
I heard the rushing of the EMTs arriving with their sirens and equipment
I remember the multiple voices saying how they were struggling to find a pulse
I could hear my Mom in the distance saying my nose was turning blue and I was turning grey all over
Then all I heard was sirens and people shaking me to wake me… “Isabelle, open your eyes. Come on Isabelle… Now Isabelle breathe. Breathe Isabelle. Remember to breathe”
My hand felt warm as the EMT held it tightly, whispering to me that it would all be okay
Every time I struggled to open my eyes I saw my mom there riding along with me, just like she has this whole journey.
Then I was in the ED, surrounded by doctors and nurses
It took hours for me to feel normal again. I was unable to talk or properly process things until later that evening. The whole severe episode lasted over 45 minutes. What it was is unknown… There are many theories. My cardiology NP, the brilliant Erin Marriott, called us today with an idea. They believe I had a hypotensive crisis. If that is correct, not only do I have hypertensive issues (high blood pressure) but also hypotensive issues (low blood pressure). I was admitted that day for observation.
I was however able to see so many people that have become a part of my family. I got to see my favorite residents, and spend the day with my AWESOME primary nurse, Nikki. Without them, I would honestly feel a bit crazy in there. Later that evening on Tuesday I got to go home.
That whole emergency situation made me feel very thankful for all of the first responders we have. They all came as quickly as possible, with the focus of getting me to AFCH as soon as possible. I am forever grateful for all that they do. They really are heroes.
As for the current plan, I also have wonderful news. Tomorrow I go to Children’s Hospital of Wisconsin (CHOW) for my autonomic nervous system testing. I have had this done twice before at Mayo Clinic, but the autonomic GI doctor at Milwaukee CHOW wants it to be repeated.
Then for the amazing news… Drum roll please… My appointment with the motility doctor that was in late July has been moved up to this Monday!!! Dr. O’Connell is my brilliant GI doctor here and called them yesterday morning and got my appointment moved up. I am so grateful for his leadership role in this journey. He has advocated for me from the beginning.
So the plan is tomorrow morning my Mom and I head out bright and early to begin the next leg of our journey. While this road hasn’t been easy at all, the steps in the right direction make me feel alive again. I have so much hope for CHOW. The thought of having more doctors interested in my case is magical… It makes me crave for better days, it reminds me of why I fight. I fight so I can have the best quality of life possible. Trust me, each day is so worth it.
Hugs and Grins,
Dear Isabelle, Praying for you, your family and doctors. You are an amazing young lady and I am just in awe how you handle everything with such grace. Hugs, Marelle