Acer was born with Congenitally Corrected Transposition of the Great Arteries (read the first part of his story here). In this third update, Katie shares the next part of their journey.
I hope everyone is staying happy and healthy through this current state. We’re here to tell you part three of Acer’s heart journey.
I last left off when the lockdown had started, and we were uncertain of the next steps Acer was going to face. On the 23rd April, we had our usual clinic appointment at BCH. This time, only I was able to take Acer, whilst Dean had to wait at home.
Acer’s ECG and murmur were no worse or better than normal, which was to be expected. However, within a couple of weeks, his SATS had dropped from 92% down to 87%. This might not seem like a massive difference, but we had to take him to A & E for a blue episode. He was deteriorating quickly, meaning surgery was needed sooner rather than later. This was for his CP Shunt. I wasn’t shocked by this, as we had been expecting it. They were unable to give us a date though, as they were planning surgery week by week.
May came and went without any problems, no appointments or any news on his surgery. I did call BCH every Monday, hoping they could give me a date to prepare for, yet still nothing. At this point my mind had gotten used to the idea Acer would be having his first birthday (13th June) at home, before having to worry about surgery. We planned a little BBQ to celebrate, just so he was able to mark his special day.
Then we got it – that dreaded call. They asked us to come in for admission on Monday 7th June. This completely threw my emotions into turmoil. We were asked to go over on the Sunday for a Covid-19 test to make sure he didn’t have coronavirus before being admitted.
Monday morning came, I called and his bed was still available. Acer’s test had came back as negative and we were asked to come in tow hours early so he could have a 24 hour tape attached.
We arrived outside the hospital and had to say goodbye to Dean outside, knowing we’d all be apart for an undetermined amount of time. Once we were on Ward 12, Acer was still being his cheeky self, completely oblivious to what was coming over the next few days. Dean and I swapped over late that night so he could see Acer one last time.
Tuesday morning was a horrible time. I held Acer up to the window where we could see Dean outside waving. This time, instead of gas, his anaesthetic was done intravenously. He drifted off within minutes, and this time I didn’t cry!
I went back round to the room at the Ronald Mcdonald House to keep myself busy. I knew he was in safe hands,but it never gets any easier. Early afternoon we got the call saying Acer was now in ICU and the surgery was a success.
I sent Dean round to see him first, as I knew he was going home in a few hours and wouldn’t be back to see either of us until Saturday.
I was sent photos of our little boy all hooked up, then the emotions hit, it took me straight back to what we went through a year earlier. Our happy little monkey was heavily sedated, on medication to stop any pain and being helped to breath via a tube.
I went to the hospital late that night. As soon as I saw him in person I felt faint. I lasted less than half an hour before I had to go and cry in the toilets. Acer had been taken off some sedation, but this just made things worse. He started pulling cannulas out, he pulled his breathing tube out and they had to put a mask on to help his throat clear from the swelling. It was horrible to watch, knowing he was in pain and there was nothing I could do to help.
The next few days were a bit off a blur. Wednesday afternoon we went back up to the ward and he had been weaned off the majority of his meds. Thursday was the same, oxygen was turned off and he was a little more active. However, on Friday he had to have an NG tube fitted as he refused to eat. It was a massive blow, thinking he was going backwards instead of stepping forward.
Saturday morning, Acers birthday! I got there early, thinking he’d be wide awake. Of course not! Acer was fast asleep. But the ward staff had covered his cot with balloons and banners, it made everything feel so much better.
He woke up happy, ate his breakfast and even drank fluids. Thank goodness! Dean came over and went to see Acer while I had a break. He video called me to say little man had eaten most of his lunch too, more good news. Suddenly, a load of voices came in the background singing happy birthday with two presents for him. This definitely made me cry.
When I went back to see Acer he was climbing all over the place, back to normal. Just then the doctor walked over, removed Acer’s NG tube and said we could go home!
In and out within a week, I couldn’t believe it.
We were all ecstatic to be leaving. We only had to come back on the Monday to have his stitches removed.
Acer was sent home with five meds, which have to be taken a couple of times a day – a small price to pay after everything. It’s now a week since we left the hospital and everything is still looking up. Acer’s getting used to taking his medication, sleeping like normal and eating everything. We are due back to his clinic in three to four weeks.
Even though it has all been a success, it has taken its toll on us all. Me and Dean are both mentally and physically exhausted. Acer has a lot of separation problems, which I dont blame him for.
It was horrible having to split our family up, having to take turns to see our son and not being able to be together before he went under. We hope everything stays positive for at least a few months so we can all recover.
I will make sure to keep everyone updated. Thank you all again for reading, stay safe.
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