So there we have it, so far we have had multiple appointments to find a preliminary diagnosis and then we played the waiting game.
30th June 2016 could not come soon enough. But then I also never wanted it to come. I never wanted my son to be struggling like he was and I didn’t want him to have to have surgery but fate sealed our hand. We had no choice. It was surgery as there was no alternative and his frail little body wasn’t managing with the stress of the breathlessness.
Atticus didn’t meet his milestones. He couldn’t sit up on his own, he couldn’t roll over. He literally just laid down and slept. He wouldn’t tolerate tummy time at all. It made him scream. (That was the chronic reflux for you. ) But he smiled. Smiled lots. The kind of smile which warms you up and lets you know that in his own little way he gets it. He knows what you are trying to do, and that you are doing it because you have no choice.
We travelled up really early on that warm summers morning. It made no difference to me what time we caught the train. I hadn’t slept for weeks. I was living on my nerves and I was determined I would be strong for Atticus and also for his two older brothers, who were so tuned in to how I felt I almost had to downplay how serious this surgery was for their little brother, highlighting instead, that once his surgery was done and he was back home, he would be giving them a run for their money and they had better watch out.
It was the only way I could cope to make light of the situation at home, but also to make it very clear that there were no other options and their little brother was very sick.
The Doctors and nurses were beyond amazing. Atticus was the first to go down to theatre and I held him tight while they sedated him. I kept it together, I didn’t cry. I didn’t want Atticus seeing me upset. I gave him a kiss and I left him with his ENT consultant and all the theatre staff and I let them work their magic.
And boy, they didn’t disappoint.
This Warrior, this amazing and strong little boy, transformed.
This is the before and after pictures of his larynx. His ENT Consultant said it was a very significant case of Laryngomalacia and diagnosed the chronic reflux and tracheomalacia as well. She said there may be a chance that he would need further exploratory procedures but we thank God we haven’t had to go down that path. Instead we have had other paths to travel.
The first few days after surgery were touch and go; his SATS dipped very low when he slept so we ended up staying in hospital for five days. On the last evening they said they would do a sleep study – they were not sure if these dips in his oxygen levels actually were a common occurrence and we just weren’t aware of them when he slept, or whether it was due to swelling in his larynx after the MLB took place.
We were lucky to have visits from close family including Nanny and his brothers. We also were given permission to leave the hospital for an afternoon as there was a fundraiser for the hospital at the Archbishops Palace.
We came home on his first birthday. The most amazing and incredible gift someone could give a mother and a child. A chance to come home.
In the months ahead Atticus became a transformed little boy. The energy he had was beyond my wildest dreams and I felt like my little fighter had been mended.
We returned to see the ENT consultant, and she was still worried about his breathing and his wheeze, so he was referred to the Respiratory Team. It was at this point I felt quite numb, I had no idea his journey wasn’t going to end there. And it took months to realise that we were going to head down multiple paths and routes and what felt like darker and darker places for us all.