Difficult Decisions

Over the past month, Ian and I have had to make some of the toughest decisions as parents.

1. Deciding whether to intubate Vera

When Vera worsened and struggled to breathe, we were suddenly under pressure to decide very quickly if we wanted to intubate her. We knew intubation would be painful (having a tube down your throat all the time, and she'd have to be heavily sedated and on strong painkillers). Seeing her struggle to breathe, our gut feel was to go ahead, and for sure, it was the right decision.

2. Deciding whether to "upgrade" to more powerful Oscillator

When she was intubated and put on the Ventilator, the settings kept increasing to support her. Question was, if we'd reach the max of Ventilator capacity, do we upgrade to the Oscillator? After learning that they would need to paralyse her body in order to put her on the Oscillator, we decided not to.

3. Deciding what to do if she de-sats again

At the maximum settings of the Ventilator, Vera had two episodes where she struggled to keep her oxygen up. Each time, she had to be bagged several rounds to bring her back up. Those were her darkest days. We were asked what we wanted to do if she should de-saturate again and could not be brought back up. Doctors and ourselves were primed for it to happen a third time, but Vera spared us from that agony.

4. Deciding whether to re-intubate her

As the time came to extubate Vera, we were told that there was a possibility that she may struggle to breathe on her own without the tube. In such a case, putting it back in was an option. Re-intubation meant another few weeks of sedation, and subsequent extubation success was also not guaranteed. At such a point, surgery to insert a trach at her throat may have to be the ensuing course of action. We did not want Vera to go from a life of no suctioning when well to suctioning regularly round the clock. We decided against re-intubation.

It meant the stakes were high. She HAD to breathe on her own when off the Ventilator. To give her the best chance, together with the doctors, we tried to prolong the period she was on the Ventilator, to give her enough time to prepare. The trade-off? Very bad withdrawal symptoms later on for being on the sedatives for so much longer.

Going through this life-threatening episode has been a great learning experience for us.

We've experienced first-hand the kinds of treatment and equipment used in life-saving.

It gives us much food for thought: If it were us, how far would we go to save ourselves? If we were so knocked out and can't communicate, would we agree with whatever was done to us? How would we tell our loved ones, that we want to keep fighting or when enough is enough?