Progressively worsening admissions

Zack remained reasonably well until around May of 2021 when he was admitted into Warrington Hospital requiring oxygen and antibiotics. 

What followed was a series of progressively worsening admissions into hospital. From this point until Zack passed away he had nine admissions. This period became our battle ground, looking back now I can see how we were in a constant stream of stress, fight or flight, we were battling to save his life. 

As each hospital admission occurred the need for oxygen increased, the use of stronger IV antibiotics was required. We got to the point whereby we were being trained to provide Zack with chest physio twice a day, nasopharyngeal suctioning, giving saline nebulisers, colomycin nebulisers and oral antibiotics. 

Our world became a routine of chest physio and suctioning just to keep his secretions clear. And as for keeping a check on his oxygen saturations, that was constant. 

Each added routine medical instruction was chased by ourselves. During one admission the respiratory doctor changed his oxygen saturation levels to go from over 92 to anything above 85 is fine as long as he isn't going blue or working hard. I think what this doctor failed to tell me at this point was that Zack was in respiratory failure. 

I remember asking in one consultation, following a bad admission for an infection. Is this it? Is Zack deteriorating? To which I was told no, this isn't his new normal. Itt was, it was to become his new normal. His lungs had colonised pseudomonas, a nasty bacteria, notably difficult to ever eradicate. Despite our best efforts of chest physio that tried to loosen the sticky mucus off his lungs we could never clear it. 

I remember one day going through Zack's daily routine, patting his back for five minutes trying to clear his lungs. He looked over at me, as though he was saying enough, enough. You can't win. And we couldn't win. 

It took a new consultant to speak to us frankly to confirm what I knew. Zack's lungs were failing, despite all we were doing, his body could not support him any longer. His body had grown around the injury of his brain and he was now struggling.  We talked about advanced care plans, about what we may or may not want to do. What interventions we would follow. 

After this meeting Zack didn't give us time to complete the plan, as usual Zack took matters into his own hands and he lead the way. He took us by the hand and walked us through his final journey.