You’re Loosing Me - Blog Posts

Today I’ve been looking at photos of our son and thinking of him a lot. Now its about one week til his birthday. This time of year is extra hard because it’s brings up so many memories. After dinner this evening is was loading the washing machine when Ronan by @taylorswift started playing on my phone and I broke down completely. Crying like never before in a pile at the floor. It has always felt like a really sad song but today the words reminded me more than ever of the son we lost. Sometimes I really need too cry like this to heal. Thank you Taylor for all the music you’ve created that helps me sort my feelings when I need to. 🙏🏻❤️

How I try healing and coping through @taylorswift ‘s music after loosing a child part 2

We lived really close to the hospital and we arrived there in under five minutes. It’s now around 9 am. The nurses behind the glass looked at us and just continued talking to each other. Finally they came out and asked us to follow them into a examination room. We got him out of his car seat and put him on the table. As soon as we laid him down he collapsed and the nurse picked him up and ran inte to another room. We run after and in the matter of seconds several doctors and nurses came running in the room working on him. We just stood there in the back of the room frozen by terror not knowing what’s happening. After a few seconds one of the doctors turnes around and says. Just so you know, he might not make it. Then we both fell into a pile on the floor not even being able to breathe.

In what seems like forever they managed to get him back and after getting the hold of all necessary equipment they tell us they are going to try to move him to the ICU.

Now they do a really thorough search of what’s causing this. And after several tests, ultrasounds and X-rays they find that he has a birth defect on his heart called hlhs. We find out that several of the hearts bloodvessels are to narrow and connected the wrong way. It Also means that the left chamber of his heart is severely underdeveloped. He also has a hole between to parts of the heart.

They inform us that to have a chance he needs to be transferred by helicopter to the other side of the country to a hospital were they specialises in children’s heart diseases and there he will need the first of many heart surgery’s immediately. That if every thing checks out he will have 95% chance of a long life just not like a professional athlete. It will be a struggle with many surgeries to fix the heart and then most likely a heart transplant in his 20,s. We’re also told that we most likely will have to live at the hospital the entire family for his first 8-10 months. So now all we have to do is to wait for the helicopter to arrive so that they can move him as soon as possible.

The hours went by and when we wouldn’t stop asking they finally tell us that their sorry but the helicopter hasn’t passed the i inspection and hasn’t been granted permission to fly. They continue testing several times but it just don’t pass the inspection.

Now even the doctors are getting really concerned and tell us that he really needs to be moved because they aren’t used to treat so small children with such a severe condition’s . Now they start to gather an expert team through videoconference with experts from the entire country. They decide he needs to be moved immediately to the closest specialist hospital if he is going to have a chance surviving the night.

I get to see them loading him in to an specialistambulance and then they put me in a taxi. We drove really fast for about 1 hour. The taxi stayed right behind the ambulance the entire time. We arrived at the next hospital around midnight. And now their experts were working every minute with him to get him to survive until the helicopter would be granted to fly.

To be continued