“Of course I’ll stay with him” I said to Toby’s nurse. After all they were just popping a picc line into his upper arm with some local anaesthetic. For the past 17 years, I’d always been with him while he had countless cannulas inserted. How bad could this be?
However, the next thing I knew I was being encased like a beetle in a lead skirt, huge lead gillet and leaden necklace. I struggled like an overweight bear to balance on a high stool, trying not to touch any of the buttons on the ultrasound machine beside me.
A surgical trolley was wheeled in and with the protective sheet removed, revealed its booty of an array of syringes, needles, scalpels, a sewing kit and a pile of surgical sheeting. Starting to feel nauseous, I knew I was way outside my comfort zone but quickly focused back on Toby. When he had a picc line put in previously, I hadn’t been informed in time and so wasn’t there for it. I vaguely recalled it hadn’t been a pleasant experience for him.
Last October, Toby had only been out of Great Ormond Street Hospital for a week, when routine blood tests revealed he had caught CMV, a virus which was a serious threat to his new heart. So, having had only one osteopathic treatment which saw him change from sofa slouch to bouncing around like a spring lamb, we reluctantly returned to the same ward for twice daily intravenous cytotoxic antibiotics.
Six months later, Toby had been clear of this for all three of the past monthly tests and the prophylactic tablet treatment was stopped. However, at our routine clinic appointment last Wednesday, I told the consultant cardiologist that Toby had become increasingly exhausted over the past few weeks. Having already shown positive for the other dangerous virus EBV (glandular fever) we did not expect to find out the worst.
The following afternoon the hospital notified me that a very high count of CMV had been detected and now Toby was fighting off the two viruses that they really didn’t like heart transplant patients to ever get.
With the crushing news, I called Toby’s college and they pulled the startled teenager out of class and bundled him in a taxi which took him straight to GOSH.
At the same time I changed into jeans, boots and a waterproof coat and headed on to the tube train in an almighty hail storm to meet him in the X-ray department for ultrasound checks on his swollen lymph nodes.
The next thing we knew he was admitted to the very same room as before and we were embarking on yet another scary journey with unknown outcome.
Back in theatre, the radiologist manoeuvred an x-ray machine above Toby’s upper torso and several intricately positioned green surgical sheets with immensely sticky strips along their edges were stuck to him until all that remained exposed were his face and upper arm.
Toby has the ability, learned from an early age, to remain perfectly calm, stay grounded within himself and be awesomely accepting of his situation.
On the other hand, my queasy tummy was telling me that I’d bitten off more than I could chew. Eyeing the door, I pushed my fingers through his shiny chestnut hair and took some deep breaths.
The surgeon was friendly, reassuring and efficient. She began immediately and told Toby that he was in charge and that he could ask her to stop at any time. She said she would talk us through the procedure as she went.
Meanwhile, all I had to do was not let my lead outfit with the cheeky cat motif topple me off my chair and smash to the ground like Saddam Hussein’s fallen statue.
Toby stared ahead as the doctor injected the local anaesthetic and I tried not to look as she took the scalpel to his arm. Instead I watched the ultrasound screen intently and saw the colour changes denoting the liquid entering and the wire which she threaded into his artery.
Bizarrely, we all chatted together with the nurses and radiologist as though we were at a mutual friend’s party and they excitedly talked about this new investigative radiology suite which they had only inhabited since last Monday.
The picc line tube was now being inserted over the guide wire and the x-ray machine showed it arriving as expected in his chest. What was unexpected however were the six metal butterfly clips which showed up along Toby’s sternum resulting from the heart transplant surgery last September. We idly wondered if he’d set off the alarms in the airport security next time he went travelling.
Next the doctor took up her curved needle and thread and neatly embroidered a plastic device to his skin to hold the line securely in place.
I was so glad when this was over as I hadn’t anticipated the sterile conditions of a proper theatre; even the head of the x-ray machine dangling above Toby wore an enormous shower cap fit for an elephant. I wasn’t even allowed to touch the green sheeting adorning Toby’s horizontal body. Indeed the worst part of the operation was the removal of these sheets as the sticky strips were not keen to let go of Toby’s skin. The only solution to removing it from his arm pit was to snip off his little hairs rather than end up waxing his underarm!
Wrapping him up in his warm dressing gown, his ward nurses placed him on his waiting chariot bed and wheeled him expertly and without incident back to his en-suite jail.
As we left, the charming doctor graciously accepted Toby’s compliments that she had done a better, less uncomfortable and painful job than the previous male doctor. With a twinkle in her eye, she steered her colleague towards the office and whispered that they should look back at their October records and discover who the incompetent male was…
There’s a postscript to this blog. Today (4/6/2014) I went with Toby to have a repeat ultrasound scan of his lymph nodes. The doctor appeared around the colourful blind and said, “Hi Toby, remember me? I’m the doctor who put in your picc line last October!” We couldn’t help it; we were giggling together like naughty children as he continued, “I do hope mine was a better procedure than this time!”
Then he scanned Toby very thoroughly for over half an hour and at one point asked him to hold his breath. After a very long time Toby suddenly exhaled and laughed loudly making us all jump. It turned out the doc forgot to tell him to breathe normally – more giggling ensued…