For Megs first operation, we had to be there the night before. This was so they could do baseline observations on her and check she was 'tickety-boo'. Walking down the long nightingale ward into the HDU area my eyes were drawn to the poorly children. Kate, her assigned nurse was very kind, and efficient (believe me, when someone is going to be looking after your child after they've had brain surgery, you don't want a faffy-wishy-washy-airy-fairy….). We were shown all around the ward and made to feel very welcome, but it didn't make it any easier. I held it together for all of 10 minutes, before bursting into tears, telling Kate "There are so many really ill children…." (state the obvious why not….idiot!). Looking back, I realise it was such an awful time that I couldn't even contemplate that one of my own children was 'really ill'.
She was first on the list for surgery the next day, her consultant said, she had waited long enough for this operation and so would be first in! A student nurse came and asked us if it would be ok if she observed the operation as she had never seen this particular procedure done before, she was a very chatty and personable young girl, and of course we said she could. Then before I knew it, the 'team' came to collect her, and we all walked to the operating theatre. That walk down the ward is one I have since done many times, but the first time felt like we were going to the gallows. All I needed was a drummer and some sombre music (and no, I don't mean Phil Collins…).
If you have ever had the pleasure of seeing your child go unconscious from an anaesthetic you will know that it is a terrible moment. And the walk away from them, leaving their life in the hands of someone that you barely know, let alone understand most of the time, is one of the bravest things a parent has to do.
Craig held her hand, and when she 'went' - her eyes were still open, a fleeting look of panic crossed between us both, the Anaesthetist obviously used to this reassured us that everything was fine.
"Please take care of her. She is very precious." was about all I could manage, before backing out of the door with Craig, tears blinding me so badly I had no idea where I was going, and so I hid behind the door, and cried huge heaving sobs into Craig. Kate (a veteran at taking parents to theatre), came prepared with tissues in hand, which was a good job, because I was joined to Craigs chest with a suspension bridge of snot and tears. Mute with grief, I was still glad that nobody else had seen my heartache, and stood and blowed my nose, and wiped my eyes, and Craigs top….. when I finally turned round to go out of the door, I realised I was standing opposite the operating theatre staff station, where there were about seven members of staff looking at me, every one of them smiling and asking if I was alright. "I'm fine! I'm fine! Sorry!" I said, like a demented mother, cringing at the thought that they had just witness my most vulnerable moment in life.
Kate said that she would give us a ring when Meg was ready to come back from the recovery room. It would be some hours yet, so we should go and get something to eat, and have a wander round, to take our minds off the operation. We went for a walk into Birmingham, had some lunch, then came back to the Ronald McDonald Accommodation that had been provided for us, we read and read, and read some more, watched tele, tidied up, washed up, went for a walk, and then when we could wait no more, we went back to the ward to wait by her bedside.
When the phone call finally came, I couldn't get to the theatre quick enough. The relief that she had actually made it through was overwhelming. She was complaining of ear-ache when we got there, and they had given her some very strong painkillers to help. Her pain score for her head was a 3/10 - a miracle! "I have no headache!" were the first words she said to us. She was relatively 'tube free' considering, and they hadn't shaved her head. However, she did look very pale, and the large bloody saturated patch on the pillow was an indication of what had gone on. Going back into HDU was not as calm as the rest of the ward. She was on 15 minute observations for the first eight hours, and so even if she wanted to sleep the anaesthetic off she couldn't.
Whilst they were settling her in the Student Nurse came to see us, eyes as wide as saucers and obviously very excitable from seeing her surgery….
"Ooooohhhhh, she's gonna be sore!"
"They didn't 'arf have to force it down!"
"You should have seen them drillin' into her head *pained screwed up face* stuff spurted everywhere!"
"It was AMAZIN' - but god bless 'er, she's gonna have one heck of a headache!"
"….AND there was looooooaaaaadddds of blood, ugh!"
At this point, Kate very diplomatically asked her to see to another patient. I howled with laughter and Craig was a paler shade of green….
It wasn't long before the surgeons came to see us.
"Everything went ok. We had to use Magnetic Imaging Guidance to get the shunt catheter in place, as her ventricle openings were so tiny. When we drilled into the skull, the fluid just shot out, so we know that her pressure was very high. It couldn't go in the normal situ as it was too dangerous to attempt that, we had to go where the ventricles were bigger. She will be bruised, because feeding the tube down under the skin from the skull into the stomach was very difficult. Her body is very fibrous from the Turner Syndrome, so we had a bit of a battle. This is not an operation that we would want to repeat without there being a definitive reason, I will be around today, so will keep an eye on her progress."
and then he went.
Kate and her team were so lovely with her, I was so grateful and humbled by their kindness shown to my daughter.
About an hour later, Meg was seriously complaining of ear-ache! It was worse than the surgery, and when I looked at it, we could see fluid coming out of it. I called Kate over to see if it was normal. She in turn called the Consultant to come immediately and have a look - the last thing they wanted to see was CSF leaking out of her ears…..
This was when they realised that they had spilt Betadine into her eardrum, making her permanent perforation even bigger. No wonder it was sore! More painkillers were requested.
Five hours after surgery she had perked up a considerable amount. I am always amazed how children bounce back so quickly…. She wasn't allowed to sit up for four hours after, and then it had to be a very gradual increase to get her into a sitting position in the bed. Once she had balanced herself out, she was desperate for a Chicken Wrap, which the kitchen sent up for her!
Not being allowed out of bed for 24 hours, she settled down for the night. Craig and I just about getting enough courage to look at her scar. Separating Megs hair, Kate showed us where the incision was and what was where. My stomach was doing back flips, Craig was steely interested - engrossed in the mechanism of the shunt, where as mine was in amazement not in the technology, but in the beautiful plaits her Consultant had put in after surgery…..
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