Family’s rollercoaster week – but Liam is definitely home for Christmas

After a rollercoaster of a week, the family of Clonberne toddler Liam Mac an tSaoi have been told definitively their “maneen” will be transferred to University Hospital Galway by Christmas Eve with a move home within weeks of that barring any further hiccups.

His mam Louise got a call from the CEO of nursing and midwifery on Monday that the boy’s home care package had been agreed and approved. Late last week following a second meeting with Health Service Executive (HSE), hospital officials said this would take up to a year to finalise.

Louise was also told over the phone that nurses to take of Liam at home and in the hospital had been recruited and would start by January 6.

The hospital was putting in place arrangements to ensure he could leave Crumlin Children’s Hospital by Christmas Eve.

Last Wednesday the family was over the moon when they learned their campaign to bring him home for the first time instead of facing into his fourth Christmas in an isolation unit in Dublin had been successful, with HSE staff assuring them arrangements were on track.

However their hopes were dashed the following day when a different set off of officials stated that the timetable was unrealistic and the budget for the year had already been spent.

Recruitment of nurses and the homecare package would likely take a great deal of time, with the timetable stretching to months, she was told.

That all changed after the phone call on Tuesday.

“It’s big news. Everything is finally looking good. I contacted the TCU (Crumlin hospital unit) to see if I heard wrong and the director of nursing confirmed that the move is imminent. An advocate for tracheotomy patients also rang to confirm it was true,” she explained.

“At the moment though the biggest hiccup to the plans is Liam.”

Over the last few days the three-year-old has fallen unwell and has been diagnosed with RSV, which is an infection that attacks the lungs, which is very serious in Liam’s case as he has chronic lung disease.

“He had it before and he pulled through. He’s got through worse. He has a lot of support for breathing.  We were only saying if he gets through the winter without another  virus his lungs will get strong again. He’ll be monitored closely the next few days and hopefully be on track for next week.”   

The family have decided to take up the offer of a house near the hospital so that they can at least be all together if Liam’s transfer does not go as planned. A catering company has offered to provide with food for a few days over the festive season if they are in Dublin. A good Samaritan has also replaced the four tyres on her car.

See full story in this week’s Connacht Tribune.