My Daughter’s Brain Surgery: Five Things I wish I’d Known to Expect

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Hana spent a whopping two weeks in Pediatric ICU

“When you wake up, the tumour will be gone.”

Hana and I planned to sing a lullaby my sister in law made up until she fell asleep from the anaesthesia, the “stinky gas” as we had for her other surgeries.

The Anaesthesia and The Surgery

Unfortunately the anaesthetic induction didn’t go as smoothly as I’d planned. As soon as Hana saw the gas mask she began screaming and writhing to get away from it. I’m not surprised, the gas really did reek of toxic fumes, it was quite a stench. I sat on the bed with her in my lap and tried to soothe her with comforting words and songs but nothing worked and she become even more frightened as for some reason the gases didn’t work as quickly as they had for previous surgeries. These were long, agonising minutes for me. I will never forget her beautiful face, contorted in terror as the staff forced the mask down over her mouth and nose. She screamed for me to help her, her eyes searching for me sideways. One of the last things she screamed before the gas had it’s way with her was a gut wrenching call: “Oh God, please HELP ME.” 

As she succumbed to the deep sleep, I felt my energy drain away like water rapidly pouring down a plug hole. I kissed her damp cheek and staggered out of the anaesthetic bay my head spinning and eyes fuzzy. My legs weren’t keen on supporting me anymore, I wished that I could just faint. I needed a few minutes ‘out’ for darkness to swallow me up for a while, a chance to escape the agony in my chest. “Oh God, please HELP ME.” Unfortunately for me at that moment I didn’t pass out as I’m not a fainter and never have been. One of the nurses called my husband in to sit next to me (only one of us had been allowed to go in the anaesthetic bay), both asked me to sip some lemonade which I reluctantly brought to my mouth with shaking, almost ataxic movements. I didn’t want sugar to revive me, I just wanted out, out of this for a few minutes. My angel had fought so hard to stay awake and now she was on the operating table, her head about to be opened and what did the future hold for us now?

After a few minutes of ‘out’ time I grit my teeth and forced myself back to reality. Now the longest day of our lives had begun. We expected the surgery to last between 4-9 hours.

When the phone rang 3.5 hours later, asking us to come to Recovery we were beside ourselves with terror and elation. This was either very good, or maybe bad. Either the surgery had been highly successful and the tumour removed easily thanks to the skill and dexterity of the surgeon OR it meant that he had only been able to access a small portion of it, and that she’d need another operation. OR perhaps she wasn’t faring so well on the operating table and needed to be awakened.

When the surgeon came out of the recovery room grinning broadly at us we all started crying and laughing at the same time. In spite of its enormous size and large calcified areas, he’d managed to get it all out in one! I felt like throwing my arms around this amazing man who had so tenderly placed his hands in my daughters head and saved her life with such skill. I don’t know what words you can use when someone has just saved the life of your child, nothing seems adequate, no gift is large or precious enough.

We saw her minutes later. She was trembling with cold and was covered with warming  blankets. Pinprick pupils, eyes constantly flicking around. She knew who we were. I bent down to kiss her forehead, the pocket of air above her face was thick with anaesthetic fumes.Then she was taken to ICU, a cocktail of drugs administered and a battle of painful procedures undertaken which were very unfortunate. Her screams were quiet, high pitched little wails, like a weak puppy or kitten’s, thank god that she won’t ever remember those awful hours. She quickly began to hallucinate and this delirium lasted about 10 days.

Five Things I wish I’d known would happen Post Brain Surgery:

The Delirium

I wish I’d expected this. To be honest I don’t think anyone knew what to predict post operatively, her tumour had been very extensive and everyone reacts differently. She also had an Extra Ventricular Device (a drain) that started deep inside her brain, draining fluid out when the pressure inside her head was too high. There is a chance this tube further irritated her already inflamed brain tissue. However it was very worrying to see her so angry with her ‘pens’ (her bandages) or the bed full of orange worms, the wound from her arterial line that was talking to her, (she thought the scab was a ‘prince, wishing her good luck for the race’. Talk about freaky) or to try and convince her I had taken her inside from the ‘balcony’ or off the boat when her eyes were telling her something else.

The Micro-Sleeps

For the first 5 days Hana was unable to sleep for more than a few minutes at a time. I have minimal neuro-nursing expereinces and so found this very disturbing, but one lovely ICU nurse assured me that many neuro patients only have short sleeps post brain surgery. In the beginning she was hourly neuro-obs anyway and needed to be woken even if she was asleep so her nurse could check her pupils and orientation. Kind of pointless checking the orientation of someone who has only had a few minutes of sleep in 5 days though…

Short Term Memory Loss

We are 10 weeks post op now and although her short term memory has come on in leaps and bounds compared to the early days post op, it is something that is still deficient. For the first two weeks, Hana couldn’t remember whether or not she’d had her surgery, if I asked her where she was, after ruling out home and the ‘boat’ and after having convinced her she was in hospital, she’d remember she had a brain tumour but would still think she was about to have her operation. Getting home was helpful in working on this memory loss, however for the first week at home (so at the 3 week post op mark) she was easily confused about the time of day. She’d fall asleep at night, wake 10 minutes later and think it was morning. Or my husband would come home from work, greet her, go and get changed into his pyjamas and come back out to eat dinner and she’d think it was mid-morning and that he’d had a lie in. It was really quite terrifying, we had no way of knowing if this would improve! She’d write down things to help her remember (i.e what she wanted to eat for breakfast the  next day) but then completely forget she’d written anything down and I’d find random, abandoned notes lying around the lounge saying things like ‘cereal’ or ‘beans on toast’. The short term memory loss really began to improve at the 6 week mark after one particular session of lazer acupuncture. She began to remember little things, like what was for dinner, or what activity she’d done in the morning. The improvements now are extremely encouraging, slow but steady.

Aggression 

Hana was on enormous doses of a steroid called Dexamethasone to reduce brain swelling and facilitate the body’s stress response to the surgery (now that Hana has no pituitary function). I hadn’t known that dexamethasone in enormous doses could cause psychosis, but luckily our endocrinologist told me that, later that week. But I think it may have also contributed to some aggression in those early weeks. Hana is as gentle as a mouse and would never dream of shouting at anyone nor hitting anyone. It breaks my heart that she was so agitated by the drugs that she needed to lash out at me and also at herself. But I’m glad it was me that took the brunt of it and no one else, almost like she knew I would be able to take it. Now her steroid dose has been lowered to physiological levels to replace her missing natural cortisone levels and she is no longer aggressive.

Emotionally Labile/Mood Swings

My little girl was easily upset in the early weeks post op. It would take small things to set off long, loud fits of sobbing. Then, as if someone had flipped a switch she’d wipe her tears away and act as if nothing had happened. We all tiptoed around her those early days, trying our hardest to do and say nothing to set her off.

I also wish I could have told myself back then that ten weeks on things would be so much better! The recovery is slow and we have to be very patient but we do see improvements every week. Hearing her laugh and sing to herself for the first time brought tears of joy to my eyes. I think I’ll post an update on our experiences with Growth Hormone soon and for now, I finally feel now that I can end a post with a smiley 🙂 

For more of our story on our daughter’s recent diagnosis with a brain tumour and the medical challenges we now face including full hormone replacement and the onset of hypothalamic obesity have a look at the Brain Tumour category

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