It’s been a while since I’ve written about Zach and its because I just don’t have time. When Zach was seriously I’ll in hospital that’s all I had. i spent that time learning, writing and reflecting. But now he doesn’t give me a second.
Zach is a walking, talking, signing, eating little boy. And I love it.
Medically he still has some problems. He still needs his ventilator to help him breathe but for two hours everyday, he is free to roam without it. He gets four half an hour slots. During this time he’s at his most active. This used to concern us because he had no breathing support and there was no stopping him. We thought we should keep him at arms length whilst he got used to the new sensation of freedom, but all we did was restrict his playtime. Now as long as I can hear him I’m happy. He climbs stairs, plays hide and seek, explores the garden and somehow always ends up in a hat.
His cardiac problems have also been a concern. 3o’clock in the morning normally comes and goes for you all without incident. It’s been different for us lately. Zach’s heart function has deteriorated from missing beats, to not beating at times. It’s called a Total Heart Block and always happened at night.
We discussed this with a consultant and he told us the solution. We were in a side room of the children’s hospital when we were told the Zach needed a Pacemaker. We both sat and took this information in and time passed without either of us saying a word. I was seeing it as a bad thing. A Pacemaker can not be a positive. Zach wasn’t even 2.
Then “Uh-Oh”. Zach broke the silence with perfect comedy timing and the perfect phrase.
The consultant talked us through all of the positives and looking at the bigger picture it was a positive. A shock, but a positive shock.
The next step for Zach would be another operation. My little boys already scarred body had to be scarred again. It just isn’t what any parent wants. Every scar has a story but for Zach none of them are falling off a swing, or off a trike or slipping on gravel. Zachs are for open heart surgery and a tracheostomy and a diaphragm plication, and some more heart surgery. Not the innocent scars of growing up every family expects.
Our first two appointments for surgery both arrived with news of cancellations. The intensive care unit has about 18beds and all were full 24hrs a day for a few weeks. Zach wasn’t at the top of the list with his heart problem so it gives you an idea what other parents are going through in those four walls.
But it’s been done now. Zach has a Pacemaker in place to ensure his heart doesn’t go too slow. That’s all it does. If he’s fine it doesn’t do anything. If his rate falls to what is seen as too low he will get some help. Below 55 beats per minute is when he gets some help. His rate has been as low as 35. Which is low.
Zach went into surgery at 3:30pm. We took him to the theatre with his good luck toys, Sam and Pup. They’ve been to every operation with him. He went to sleep in my arms and we placed him on the bed and left the room. For those who haven’t had to do this it is a truly awful experience. I hate it. I try to stay strong for Zach and Vikki but the watery sheen in my eyes and lack of conversation says different.
3 and a half hours later and he’s back. He has a morphine infusion for pain. Anti-biotics are given to prevent infection. A tube is coming from the side of his body to drain any excess fluid from his chest. Basically blood. He’s monitored on his chest, his hands and his feet. He has arterial lines and femoral lines and because Zach has been ‘difficult’ before they put in a venous line too as a just incase. He is connected to a ventilator which is doing all of his breathing as opposed to assisting him like normal and he has blood stains on him.
We get to cleaning him up but are interrupted because of the need for an x-ray. We’re told he’ll need an ultrasound the next day to check his arteries and veins and they’ll be a further x-ray done too. But he should be discharged. We couldn’t see him leaving next week let alone the next day. He’s unsettled initially but pain relief, a belly full of milk and a nurse we trust makes the evening run smoother. When it’s dark we leave. Not a lot we can do and exhaustion won’t help us one bit.
20hrs after Zach came out of surgery he gets discharged. He still had stitches in protected by a dressing and the evidence of his surgery was still dotted around the room. But we were discharged. We readied ourselves for a busy couple days of doing anything we could to ease the pain he might be in but we hit a slight problem. And that problem was Zach. He refused to get in his pushchair, grabbed his Mummy’s hand and walked out of intensive care waving to doctors, nurses and some other patients. “Bye, bye”.
I would have cried with pride but I had to catch him up carrying all his bags and my energy went into smiling.
20hrs after having a Pacemaker attached to his heart he got up and walked out of that ward. An amazing sight which inspired me.
Once at home as he was in his highchair we Skyped Granny, Pops, Great Aunty Pauline, Great Uncle Robbie and Great Granny. I think they were shocked how well he looked as well. Then it was bedtime for him. A mind blowing couple of days ending with Zach showing the world that he can cope with anything and do it whilst smiling.
I love my son and my wife a lot. This only makes me love them more. I just hope that for a while at least Zach can grow, his mind can develop and we can just enjoy being a family.
Now, we are trying to raise money again for those that have helped Zach. Taunton Opportunity Group and Bristol Childrens Hospital Intensive Care Unit. On the 11th October 2013 we are hosting a Charity Night at Somerset County Cricket Ground. It will be an evening of food, drink, black ties, high heels and raising money.
Follow us on twitter @charityr0cks or find us at Facebook.com/CharityRocksTaunton for information and your chance to take part. We need sponsors, donations and helpers.
As always, thanks for the support and for reading.