Following Harry’s discharge from hospital we started to adapt to life as a ‘Shunt family’. Harry seemed bright and sparky and was meeting his targets. So much so that in the April we travelled to Spain with Matt’s family. The holiday was lovely and much needed, however it wasn’t an easy decision to go because life for Shunt families isn’t straightforward.
The rule of thumb is that if the Shunt was to block then the patient needs surgery within a four-hour window. The decision, therefore to leave the country was really hard and one which I agonised over – imagining every horrendous scenario in minute detail. We have a lovely Spanish speaking friend who, before our departure spent ages translating all of Harry’s medical notes in to Spanish. He told me that it only took a ‘couple of hours’, I am quite sure that the reality was different, but in any case he didn’t let on. So off we toddled, four kids a massive hire van and Harry’s orange file, for what turned out to be an amazing and brilliantly uneventful week in the sun.
As the months pushed on I began to relax. The now twice-weekly head measurements hadn’t become too problematic and Harry seemed OK, albeit Harry and sleep never occurred in the same sentence. Karen was still diligently sending the measurements up to the neuro-nurses and I was adapting to working life as a mother of 4…
Then one day the phone rang. I knew instantly that it was from the hospital as calls from the hospital flag up as private numbers. I could feel my body go cold. “Hi” said the friendly voice, Harry’s head looks like it has jumped on the chart”. By chance I was heading out the of the door to the GP. By the time I arrived I was shaking so she called the Neuro-team. “Mum is very upset (no shit!) but to me he looks absolutely fine” (hummmm!). “We’ll monitor then”, was the response. Seriously, monitor! I wanted him in hospital then and there, but monitor we did.
We had a trip planned to Leeds – the advice was to go, try to enjoy ourselves but make sure we phone the latest head measurement through before we go. ‘Any change’, is the phrase we have come know. Then you know where we are.
We were eating lunch when ‘that call came”, I knew the instant the ‘Private Number’ pinged up on my phone. I ran outside to take it and the neuro-nurse kindly explained that as Harry’s head had jumped again we would need to come in and Harry would “probably need a scan”. She booked us into the clinic for a couple of days time. With the proviso that if anything changes..
Sitting in the waiting room was surreal. Harry was looking so cute and babbling away. The lady next to me kept say “Oh what a beautiful baby” followed by, “there just can’t be anything wrong with the baby”. Seriously love, we are in the neuro-unit. Do you think we’re here because we couldn’t find the toddler group?
The surgeon took one look at Harry, who to me looked perfect, and said- yes I agree, I think we will do a CT scan today. I watched Matt carry Harry into the room and then I listened to his howls as they pinned him down and bunged his tiny body into the great big plastic tube. We then walked back to the neuro-unit for the results. We didn’t have to wait long. What I have learnt is that if you are waiting for scan results and there are loads of people but you skip the queue, then it is probably time for tissues.
The outcome was that the shunt wasn’t working and Harry would need more brain surgery to fix it. Without this, the fluid in his brain would ultimately cause brain damage or worse. So there we were, back again and outside that room (again) waiting and waiting (again) for our beautiful boy to come back to us.
As the minutes dragged by and just when I thought that life couldn’t get any more stressful, ‘cleaner-gate’ happened. I suddenly heard shouting just outside the entrance to the bloody theatre where Harry has lying. As I looked up (I have noticed that when waiting outside operating theatres everyone stares at the floor) I saw a man shouting in the face of a member of the cleaning staff. He was vile and shouting all sorts of horrendous abuse at her. I couldn’t cope with what he was doing so stood up. As I did, Matt pushed me out of the way and strode over to the man. Who, by this time was eyeball to eyeball with the poor lady. “How dare you say that to her” Matt shouted “My son is on the operating table behind those doors, have some (edited!!) respect” The man then raised his fists at Matt. ‘For God’s sake’, I thought, Harry is behind that door and now this idiot is going to kill Matt.
Eventually the bloke backed down. Something in Matt’s eyes probably told him that it was best to do so. Seriously though, these people who work in our NHS should be allowed to do so without becoming victimised by knobheads. For me, this was enough to tip me over the edge and by the time they came out to say the operation was over I was a quivering wreck.
Harry had a rough time in hospital. After kicking off his cannula (very messy and lots of screaming – him and me) he seemed to improve. Lucy and Carlos came to visit and initially we thought he was doing well. However, pressures in the head after surgery can be complex and two days after the surgery Harry was very sick. He looked limp and frightened and at one point I felt terrified that he wouldn’t recover but then Harry did as Harry does. He, rallied, babbled, charmed the nurses and so they sent us home!