And the list continued to grow…

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So, the path seemed to be getting longer, my mindset had changed from that of optimism that Atticus would be fixed, and each appointment instead of expecting to get discharged, we had an uncanny luck to then be referred to yet more amazing Drs and consultants.

At the beginning of March 2017 we had a VF ( a video fluoroscopy in fact), Atticus went to our old haunt of the local hospital ( it was quite refreshing to have such a short journey for a change), and he sat in what looked like a car seat, stuffed his face with lots of barium laden food of different consistencies, and I watched in awe at the xray video which was being taken.

That came back ok. A little bit of pocketing but not too much to worry about, not at this point in time anyway.

At the end of March we were back in London to see the respiratory team. Straight away he was diagnosed with reactive airways disease ( asthma) and chronic eczema. Oh joy, more medicines to add to the repeat prescription list – this time in the form of inhalers and creams. Both of which Atticus hate with a passion.

We were then referred to the Allergy department to see why he had the asthma and the eczema. Another London trip to look forward to.

I must say that at this point we were travelling to London by train. As Atticus got older it was harder to restrain him in a seat for a whole journey  and as it was the cough and cold season, I was worried he would pick up more bugs and colds. He was so prone to it. So I made the decision to start driving up. It crippled me financially, but I had no choice.

congestion charge x2

car parking for £3.50 an hour

and the fuel.

But I always treated myself to a white chocolate hot chocolate at AMT each time, it was worth it just for that ( especially when I had cream added to the top of it)

We had multiple meetings with multiple consultants and the list of diagnosis continued to grow.

We now had our fears confirmed by the local team. Atticus had developmental delays and was being referred to Speech and Language once more. this time for his speech.

Merry Bloody Christmas Everyone!

So the journey continued. We awaited our appointment to see the ENT once more, for our six month check. His energy levels were amazing, but he continued to wheeze and get breathless easily. He was admitted countless times for Upper Respiratory Tract Infections, and anti biotics never touched the sides. Each time he was admitted Nanny came down and picked up the pieces and we went back up to our local Hospital for treatment.

Even though he had had his surgery things were still not right.

Xmas Day 2016. A call to the NHS 111 service started our day at about 7am. Atticus was a little breathless as he woke but began deteriorating rapidly. I have never called an Ambulance before, so I got the NHS 111 service to make that decision for me. Within 20 mins a blue light ambulance and two angels in disguise came and tried to make the little one stable, while we waited for Nanny to appear ( she was due down anyway to celebrate Xmas, but this time left a little earlier)

Strangely enough, the hospital was very quiet! We were visited in majors by Father Xmas while Atticus was on a nebuliser. It was a stressful and emotional time. Seeing Santa wheeled into Majors by two elves set me off. Those NHS heroes are absolutely that. Heroes and Angels. We were admitted. Then discharged three days later.

My two older boys put Xmas on hold. They waited until we were home before they opened all their presents ( but they did open some)

 

To have the boys back together under one roof was fantastic.

So Christmas happened a few days late. I held onto the strength that I was given through the prayers and amazingly positive messages which were sent to me. I felt blessed.

And within two weeks we had the first available appointment to see ENT in London. The day after we were admitted again.

And it was this cycle of cat and mouse with his health and appointments, which led us to meet the respiratory team a couple of months later. At this point we had the input from the local Speech and Language team for his swallowing also.

D Day

So there we have it, so far we have had multiple appointments to find a preliminary diagnosis and then we played the waiting game.

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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.

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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