Terrible Palsy

If you missed Part 1, you can find it here.

Susan continues . . .

The rest of that terrible day is a bit of a blur for me. On arrival at the hospital Molly was resuscitated and had a CT scan – and although I have no medical training even I could recognise a skull smashed to pieces. A neurosurgeon asked me for permission to insert a monitor to measure the fluid pressure in her brain. I asked him whether we could wait until her daddy arrived. We did.

In a deep coma, Molly survived the first surgery and the first night in ICU. As I kept my vigil and watched them pumping more & more drugs into her to try and control the pressure from her poor, hurt, swelling brain I thought: there is only so much she can take. I was spot on. They were reaching the limit of the amounts of these drugs they could give her.

It was around this time, about 24 hours after the fall, that I felt a strong urge to “give her permission to go”. Although my heart was breaking and I felt like I was in the blackest pit of hell, I stood by the bed held her hand and said the words. I told her that we really, really wanted her to stay, but if we were asking too much, it was ok for her to go. She held on.

On the second day there were more CT scans and a second neurosurgery – this time to insert a tube to drain the fluid from her brain into a bag hanging by her bed. Yet another tube coming out of my tiny little girl (the visual contrast with the 6-foot septic truck driver in the next bed was absolutely shocking). Over the coming days we watched the blood-filled brain fluid (CSF) drip, drip, drip into the bag.

The doctors showed us scans, pointed to slightly darker or lighter areas and said cryptic things like: “I’m concerned about her” – what the f*ck does that mean? to me, who doesn’t know you from a bar of soap? Of course I now recognise that if your child is in ICU and it’s the doctors requesting the family meetings, you can be pretty sure your child is at death’s door.

Molly had so many ‘complications’ to the original injury that I don’t recall exactly what started when – many of them were triggered by the efforts to save her life and numerous are still with us today, such as one fixed & dilated pupil, the hole in her skull which refuses to heal, and the bald patch on the back of her head from a pressure area due to the blood pooling in her head. In those early weeks we fought at least one major life-hanging-in-the-balance battle every day.

One example is fluid overload. With her body in survival mode she was retaining every bit of fluid she could, and they were giving her waaay too much. At one stage my 7 kg baby weighed 9 kg. That kind of excess fluid does horrendous things to your electrolytes and is very dangerous. So, yet another team of medical specialists (endocrinology) was called in to fight yet another battle. We managed to win that one too, but as always with Molly it was a close-run thing.

The first time we started allowing her to wake from the medically induced coma she started having ‘little tremors’, aka focal seizures. That repetitive ‘tapping of the foot’, which seemed quite innocuous to me, was enough for them to put her back to sleep for a few more days. The seizures returned after she was allowed to ‘wake’ again, eventually became our primary medical concern and continue to plague her to this day.

Another huge medical problem with Molly was (and to some degree continues to be) access. Meaning intravenous access. It was an issue on the helicopter when they couldn’t get a vein and had to give her an ‘intraosseous’ = a horrible needle going straight into the bone marrow of her knee. I had no idea that it is sometimes necessary to have a surgical operation purely to “get a line”. Molly had numerous such surgeries at different times during her initial 4-month hospital stay.

The first time I held Molly in ICU was one week after the accident, on her ‘6 month birthday’. It was a logistical feat as she was still comatose and connected to all those tubes, including the one leading directly into the centre of her brain. Our time together was brief and certainly not relaxed, but undeniably good for the soul. During subsequent days others were also granted a cuddle with our precious girl.

Part 3 next week