February 26, 2020
First and foremost thank you for an amazing day on Saturday at Olly’s Benefit. We were totally blown away by the support of family, friends, and community. The benefit far exceeded our hopes and expectations.
On Monday, Olly started having some issues breathing again. Over the day Monday those issues increased, prompting a trip to see her primary doctor and eventually a call to the pulmonologist on call at the hospital. We decided that on Monday night that we could manage at home Monday night and we would see how the night went.
On Tuesday morning we followed up with pulmonology and they decided that they wanted to see her in the clinic so Nate left work grabbed Olly and headed to the U of M. Once in the clinic it was decided pretty quickly that Olly should be admitted.
While we waited for our hotel room with robots, they took us to the ED, Olly got to see parts of the hospital we hadn't seen before. In the ED Olly was set-up on high flow oxygen, got an IV and had blood drawn. The doctor decided she wanted to run a few tests to rule a couple things out and check on something else.
Almost everything came normal. Almost everything! Olly had a complication with her J-Tube that was put in during our visit a few weeks ago. She had an intussusception basically one segment of intestine "telescopes" inside of another, causing an intestinal obstruction (blockage). This meant her G/J Tube was pulled out and replaced with a G-Tube in the ED.
By removing the J-Tube it all allowed the intestine to repair itself which it did rather quickly and was looking normal. However this lead to us needing to redo the procedure from a couple weeks ago to switch the G to a G/J Tube again.
So after a rough afternoon and evening that included plenty of choking on her own mucus, retching and vomiting, Olly settled down for the overnight hours resting up for her big Wednesday.
First thing Wednesday morning Olly had an Ultrasound to make sure that her intestines looked like they were back to normal. Good news is they were, which allowed her to have the conversation procedure scheduled for the same day. During the procedure Olly retched and vomited twice and her body was just overall not being a team player causing the process to take over an hour instead of the normal 15-30 minutes. In the end a new longer tube was placed and she was brought back up to her room.
Olly also started showing signs of major discomfort on Tuesday morning. The thought was that the pain was being caused by the intussusception. However she was still showing signs of pain after the ultrasound had shown that the intussusception had resolved, so now we add trying to figure out what is causing the pain to the list of things as well.
The plan is to restart feeding her through her J-Tube at some point this afternoon evening and slowly work her back to her normal feeds. We also still need to get her off the oxygen, get feeds back to normal and figure out and treat whatever is causing the pain.
We will post another update when we have more information to share.