Firstly, I would like to say that out of the 5 times we signed the serious consent forms, I’ve only been able to be there when the porters took him away once. Somehow, watching them wheel him out in the transport (which looks like a space ship) is so much worse than saying goodbye and pretending you’ll see him again after lunch. I appreciate this will need to change as he gets older as I will be there because he needs to see me be visually strong for him. But out cold on paralytics and morphine, I can honestly say it’s unlikely he missed me at all, allowing me to indulge my complete hysteria and nightmares about what I was sending him into.
The initial life saving surgery he was transferred to Oxford for was to get him intubated and on a ventilator. This was at midnight – all the on call paediatric surgeons were called in to see why no one could intubate, and to attempt it again. If they could not get a tube in, Dominic would die.
Bizarrely, this surgery went infinitely easier than anyone expected. First they put a camera into Dominic’s windpipe to identify what the issue was: a laryngeal web. This was a spider web obstruction across a portion of the windpipe near the top. After a brief assessment the surgeons rammed (for want of a better word) a 2.5ml tube through the web. Because this was easier than expected, they took it out and rammed a 3ml tube through in order to increase the dilation of his windpipe.
They stopped there. Dom was ventilated and brought to the NICU with a machine doing the work of breathing for him. He could now survive the night.
After some X-rays and ultra sounds, it was discovered Dominic had both a Trans Oesophageal Fistula and Oesophageal Atresia. TOF/OA. Put simply, there was a hole in the joining of the oesophagus and trachea (food pipe and wind pipe) and his stomach wasn’t connected to his oesophagus – the food pipe ended in a ‘pouch’.
The general surgeon on call came down to see us and draw some pictures to explain what that looked like now (broken) and what he hoped to make it look like (fixed).
We signed the form
The surgery was successful – he managed to close up the hole and rejoin the food pipe to the stomach, however, in doing so he noted that the trachea was very thin. Dominic also was suffering with trachea malagia – floppy windpipes and entrance to the bronchial tubes.
There is nothing that can be done for this – in time, as he gets older, the tubes should strengthen as he grows. But in the mean time, the negative pressure from inspiration can cause the windpipe to collapse – resulting in a TOF cough (sounds like a seal bark) in order for Dom to force it back open with positive pressure and continue breathing. While he was on a ventilator though, it didn’t matter because the pressure in his lungs was maintained by the machine.
Having done the immediate life saving surgeries, they waited a whole 24hours before embarking on what they were going to do with the one hydronephrotic kidney to give it the best chance at survival. Hydronephrosis is pretty much a dilated kidney with too much fluid in it causing back pressure. Quite simply, they had to drain it.
Back came our favourite general surgeon with his drawings to explain what he wanted to do: they thought there was a blockage in the bladder which if they removed it and put in a catheter they could drain the urine out normally.
We signed the form.
When Dominic came back, it was explained to us that what they intended was not what they found. The ureter had collapsed the bladder and was absolutely massive. To give you some idea of how big it was – it’s nearly twice as big as your fully grown adult one. In order to immediately relieve the pressure on the kidney they did a double loop urostomy and brought the ureter to the surface on his left hand side.
Imagine someone telling you your son now pees out of an ugly hole in his side… I was horrified. I’m used to it now, but I spent several days just eyeing it suspiciously, not entirely convinced that peeing through an open wound in your side was not painful, uncomfortable and gross. Also, trying to work the Urine bag, cleaning it, then learning double nappy origami was a bit of a steep learning curve.
To top it all off, when he came back from this surgery – they discovered his lung had collapsed. In order to inflate it they had to put him on high frequency ventilation which pretty much meant he vibrated for 5 days until they considered his lung would be strong enough to stay open on its own again and drop to normal ventilation.
My poor little baby now had a ventilator tube for breathing, a nasogastric tube (TAT tube) for feeding, a catheter, a longline, a chest drain, ECG leads and a sats cuff permanently attached to him. He was also on morphine and paralytics to make sure he didn’t move and undo any of the good work they did in surgery, and to make him as comfortable as possible.
He looked like he was plugged into the matrix.
On day 6 I still got to hold him for the first time 🙂