Little Theo was born in March 2015 with a rare condition called TOF OA. This is when the oesophagus isn't joined, and in Theo's case there are two fistulas (tubes) joining the oesophagus to the trachea. On day two of his life he was operated on to close the fistulas, and re-join the oesophagus. The surgeon was able to re-join the oesophagus, but was unsuccessful at closing off the tubes. After the 3rd attempt, the nerve that controls his vocal cord was damaged and his vocal cord was paralysed, so no air could pass through. He was then given a tracheostomy.
Theo was sent home and after being in distress went back to the hospital. He stopped breathing on the ward and had to be revived - a terrifying moment for any new parent. He was then left in ICU for 3 weeks on ventilation, with the doctors not knowing what to do.
Theo was sent to the Royal Children's Hospital and a CT scan showed he had an air leak coming from his Trachea. The head heart surgeon took lining from his heart and wrapped it around the hole in his Trachea. There was also a hole in the oesophagus, but due to excess scar tissue from previous operations they were unable to see where the hole actually was. So that the patch had a chance to heal without stomach acids leaking out of the hole and attacking the patch, the surgeons had to disconnect his oesophagus, and move the top section, so that when Theo swallows, the saliva drains out the side of his neck.
After many complications and the doctors telling Lauri and Josh they didn't think he was going to make it, Theo proved them wrong and they finally went home after 7 months. But this is far from where Theo's struggles end. Due to the work on Theo's trachea, he still has a tiny hole and suffers from narrowing and granulation in his airway. This is very dangerous as it closes over his airway. He requires constant care and attention. Each week, Lauri and Josh take Theo to Outpatient appointments , where the specialist pops a camera down his airway to see how it looks, then every fortnight, they dilate (balloon out) his Trachea and right bronc and if need be, grind off granulation tissue to stop it from closing over. This is the Roach family's routine and their daily reality. They have been through so much and do everything possible to make life as fun, exciting and normal as they can. But they are tired. After three and a half years, the struggle is not just for Theo's health, but for Lauri and Josh's. Exhaustion, stress and worry about Theo and being able to care for him is further compounded by the financial strain it is putting on this amazing young family.
The financial struggle of raising a chronically ill child.
Whilst it is hard to believe that in Australia in 2018, families of very sick children are not adequately supported, this is the reality that Lauri and Josh come up against. Shockingly, Theo's vital medical equipment is not fully subsidised. Theo requires Oesophagostomy bags to stop saliva pouring from his neck into his trachy, and onto his broviac site (which is his last access point). He uses over the quota that the government allows the hospital to give out each month. Lauri and Theo have been stuck on the couch with a face washer at the end of the past 4 months with no bags due to this. Two more boxes per month (30 bags) equals $1200 a year, this makes a huge difference to their quality of life, but this is money they just cannot find.
Theo has weekly outpatient appointments and driving up to the RCH and back in petrol and Citilink tolls equals $2600 a year. The cost of food at the hospital really adds up. Theo is currently staying the night at RCH every fortnight, this equals a minimum of $7000 a year for Lauri and Josh to eat whilst away from home. For Theo to attend weekly outpatient appointments, and go to theatre every fortnight, the parking adds up to $780 per year.
Most alarming of this situation are the recent changes to childcare that the government have just introduced, which sees in home care not being adequately covered to assist with Theo's care - allowing Josh and Lauri some much needed sleep. The government are no longer paying the gap with the carers help anymore. As Theo needs hourly nebulisers overnight, when this family doesn't have carer help, they don't sleep. Then they have to keep going continually, throughout the day to try and get to work and care for Theo. It is literally impossible to do this without getting sick. If Lauri and Josh get sick, Theo gets sick and is then admitted into hospital. It is also very dangerous to be driving and going to work in this state. Josh has already crashed his car and fallen off a roof at work due to being exhausted from not having any sleep. If Lauri and Josh take on carer help, the government are making them pay the gap, this comes to a minimum of $20,000 a year, just so they can sleep.
All this comes to a total of $31,600.
This amount doesn't include the cost of everyday living expenses (utility bills, mortgage, petrol, car loans, insurances, car services, clothes, rates etc).
Lauri, Josh and Theo haven't been on a holiday since Theo was born, they would love to visit Lauri's Nana in Queensland, as she hasn't met Theo. This would cost another $10,000, as they would have to pay for a Carer to go, so they could get some sleep. Every time they think about this, they end up saddened by the fact that it is literally not possible, as their is no way they can afford it.
Josh has been to work on average 2 days a week this year. Lauri is taking no money from her business, she is just paying all the expenses required to keep it going. As she has minimal Carer help, she can only get into the shop once a week, where she has to take Theo with her. Lauri and Josh have got to the stage where they feel like it's getting on top of them. The money coming in ($700 or less a week) does not equal the outgoings. They are not sure how they are going to stay afloat, and knowing they still have so many obstacles ahead, it's really stressful.
The plan for Theo in the future is for the narrowing in his Trachea to eventually stop. Then the specialist can look at closing the hole in the Trachea, getting the trachy out, possibly putting a stitch in his vocal cord to keep it open, and re-joining the oesophagus. There is much to look forward to, but right now, life is exhausting, stressful and so heartbreaking for the Roach family.
As Lauri's oldest friends, we feel so helpless and hope that by sharing their story, Lauri and Josh's huge network of friends, family and supporters might be able to help spare some cash to help out this amazingly brave little family during their time of need.
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