My 18-month Old Daughter Has a Tracheostomy and is Stuck in PICU. What Can We Do To Get her home?

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My 18-month Old Daughter Has a Very Complex Medical History. She Has a Tracheostomy and Stuck in the Pediatric ICU. What Can We Do To Get My Daughter Home?

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In today’s blog of the intensive care at home series. I want to answer a question from Paula.

My 18-month Old Daughter Has a Very Complex Medical History. She Has a Tracheostomy and Stuck in the Pediatric ICU. What Can We Do To Get My Daughter Home?

Now, Paula has the following situation. She says,

Hi Patrik,

My 18-month old daughter has a very complex medical history given her short life. She was born prematurely. She had the cardiac arrest. She then ended up with hypoventilation syndrome and she also was diagnosed with brain cancer about six months ago. She has been through chemotherapy in all of her 18 months. She has a tracheostomy and we’re stuck in the pediatric ICU and we are in Melbourne Australia.

What can we do to get my daughter home? Me and my husband have been living in ICU for the last 18 months and we haven’t really been able to get home, look after our four-year old son and our family life is just horrible. What can we do as the next steps? I’m hearing that intensive care at home can take ventilated adults and children home and how can we go about it?

From Paula.

Hi Paula,

Well, thank you so much Paula for contacting us. So, let’s look at the positives straight away. Yes, we at intensive care at home, can get you and your daughter home so you can live a normal family life. How does that happen? Well, especially for our viewers in Australia, there is now the NDIS, the National Disability Insurance Scheme and the National Disability Insurance Scheme is funding home care nursing for up to 24 hours a day and that’s how most of our clients are funded now.

They’re getting funding for nurses 24 hours a day, seven days a week, 365 days of the year, as long as it’s medically necessary. And for someone that is on a ventilator with a tracheostomy, it’s medically absolutely necessary, it’s according to best practice, to evidence-based practice, which you can look up on our website, intensivecareathome.com where we publish the home mechanical ventilation guidelines that clearly demand that any ventilated patient, either inside or outside of intensive care, needs to have an intensive care nurse with them 24 hours a day and that is the gold standard.

The reality is that adults and children have died at home with tracheostomies or ventilation if they’re not looked after 24 hours a day by intensive care nurses, and that’s just a tragedy and it needs to be avoided full stop whilst also looking at the quality of life for clients at home so that they can leave intensive care as quickly as possible, which also by the way, provides a win-win situation because we’re helping intensive care units to free up their beds and make room for other critically ill adults and children that are in need of intensive care beds, so win-win situation all around.

And for you as a family, of course, you want to go home. We know from any families that have a situation like you are describing, it can’t work. They can’t look after other family members, their whole lives are literally falling apart and again, we can help to reinstate normality by getting clients home with basically bringing the intensive care into your home rather than you going into intensive care and again, funded by the NDIS...

Continue reading at: https://intensivecareathome.com/my-18-month-old-daughter-has-a-very-complex-medical-history-she-has-a-tracheostomy-and-stuck-in-the-pediatric-icu-what-can-we-do-to-get-my-daughter-home/