Search

DAY 11 – 2 November

Michelle: We didn’t know what to expect. What did he have again? Google was our friend and there wasn’t much info available on myocarditis, and what it meant for a newborn. The lack of knowledge and information made it frustrating and hard to understand and grasp the gravity of the situation and how unlikely recovery was.


But today Conor was being transferred. That was a step in the right direction, I hoped. We were with him when the paramedics came with all their gear for the trip. We left the room while they consulted with the doctors about the best way forward. I was petrified something would go wrong. He was hanging in there, just barely. He was stable, but anything could happen at any minute. The paramedics told us to go ahead to the other hospital and get through the admin of admission and they would meet us there. My heart was in my throat the entire time we drove to the other hospital. We were waiting in line to be attended to at the admissions desk, as the paramedics walked in with Conor in the incubator. They called me over to come and check and see for myself that all was ok. I was shaking, I felt weak with relief that he had made the journey ok. It was one small step in what I had hoped would be a number of steps to getting him better. Hope springs eternal.


We went down to the Cardio-Thoracic ICU (CTICU) and saw him settled in, spoke to his new ICU doctor and were given info and details of the very strict visiting hours; we would only be able to see him three times a day, for one hour each and just half an hour in the evening visiting slot. Another piece of my heart broke.


Michael: It is decided that he would be better looked after in a Cardio Thoracic ICU. An ambulance is organised. We are scared. Conor is wheeled in just as we arrive at the other hospital. All good in the end.


The Doctors that attend to him do a full new screen on him. Very professional in their manner as well as thorough.


We are offered counselling. Funnily enough afterwards neither of us feels it actually helped. The person does not know what we are going through and what is said is not helpful, it rather feels scripted, like “this is what you have to say to people who are experiencing this”, no personal connection.



DISCLAIMER: The information on this website, including text, graphics, images and information is for general information purposes only. It is not intended or implied to be a substitute for professional medical advice, diagnosis or treatment.

 

The information contained in this website is not intended to endorse or recommend any particular type of medical treatment. Should any reader have any health care related questions, please consult your physician or healthcare provider. No information contained in this website should be used by any reader to disregard medical and/or health related advice.

© Copyright 2020

Conor James Foundation Trust 

IT000501/2018(G)

PBO number: 930065044

NPO number: 226-532

Find us on Facebook

Follow us on Instagram