September 21st 11am
I am sitting in Great Ormond Street hospital with Felix. He is prepped and ready to go down to theatre. He is having his pacemaker replaced as it has almost run out of power.
And now I am waiting for him to come back out of surgery. They expect it will take about an hour in total, and he should be home again by the weekend.
I was totally dreading coming back here and going through all this again. Even though it is a relatively minor, low risk procedure, there is still all the stuff before the operation which is the same. Inserting canulae, taking bloods, signing the consent forms, and worst of all, taking him down to theatre and holding him while he goes under the anaesthetic. They always say ‘give him a little kiss goodbye, we’ll look after him now’ when you lay your unconscious child on the trolly. That usually starts the tears flowing if they have not already started. As it is just me with Felix this time, I decided I could not burst into tears as I gave my child over so did not follow their instructions.
And now we are back on the ward. Felix is really grumpy, at times hysterical.
His mantra of ‘I want to go home’ constant. Hopefully he will sleep well tonight.
This new pacemaker is made to last ten years under normal use. But because Felix is fully paced, (meaning that the machine does all the beats) they expect to get 6-7 years which is brilliant. The surgeon did however remind me that the full repair done in 2013 will have to be re-done within five years. Looking on the bright side, he shouldn’t need any more surgery for five years!
Shap has been doing all the appointments on his own recently. I handed over the reigns after I nearly lost the plot in February 2014. Being here now I am reminded of how the staff at GOSH really go out of their way to make the children feel less anxious. So much so that when I told Felix on Sunday he would be having the operation today he punched the air and said ‘yippee! I’m going to see my girlfriend (the play therapist Vickie) and they are going to cut me open with a butcher’s knife!’ Which just about sums it up.
I have also thought about all the kindness during the year of hell, 2013-2014. The staff behind the counter at Pret a Manger who gave me free coffee on seeing the strain and anguish in my face on many a morning. The friends who turned up at my house in Somerset between hospital admissions with meals and even breakfast lunch and dinner in a box. The family members, who helped out practically and financially when we really, really needed it. The London friends who popped in to the ward on a regular basis with food when we couldn’t leave Felix on his own for very long. And those that took me out on my nights off when Shap was staying at the hospital, who fed me, listened to my woes or distracted me, depending on my emotional needs. My nephew and his wife who really were my port in a storm. The night we were told that Felix might not make it and I knew I could simply not be at the hospital any longer or I was going to lose my mind, they took me in and cooked a roast, put me to bed in a fluffy duvet in a quiet room. The first time in days I didn’t have the pinging of heart monitors, feeding pumps and syringe drivers driving through my brain. To all of you, thank you.
September 22nd, 11pm
And now we are home, two days earlier than expected. Everything went smoothly. In the end, Felix was only in hospital for 36 hours. He has a very neat wound, and though hobbling, is in good spirits. A few days on the sofa and he should be right as rain. For the first time in his life, we are no longer waiting for a date for surgery – his ‘big repair’ was looming since his birth and then there was all the other smaller stuff, some planned and some unexpected. In total Felix in his six years has had eight surgeries and ten emergency hospital admissions. We still give him heart meds throught his PEG but we have not used it for food in nine months. He is finally growing on a steady curve, his energy is good and he is happy. I think I can finally say ‘phew’.