The Long Road

$29,735 of $30,000 goal

Raised by 209 people in 8 months
Created September 28, 2018
As parents, we all know how exhausting it can be when our little ones are sick. It is tiring, heartbreaking and you'd do anything to take away their suffering. Fortunately, for most of us, the sickness passes and we are back to some sort of normal. But for our dear friends Lauri and Josh, the night's and days, and weeks continue to roll into one long, painstaking, exhausting journey caring for their amazing little fighter, Theo. But despite all his achievements and incredible strength, it is now time for Lauri and Josh to get some help, so that they too, can have some sense of calm, rest and stability in their lives.

Theo's Story
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.

Thank you!
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Just a little update on how things are going in our world.

Theo had his scheduled dilatation last week, and the doctors spoke to us about the meetings that have been going on in regards to a plan.

They are concerned about the amount of general anaesthetics he has had, its over 160 now, and apparently there is research showing now that just one general can have an effect on a child neurologically.

They think a way around giving so many generals, would be to pop a stent in his airway to keep it open. The stent they would like to use goes down the Trachea and into the left and right bronc. It has only been used on adults patients with cancer, so they are not sure how this will work in Theo’s airway.

The risk is that the ends of the stent could potentially rub on the right and left bronc, which can cause granulation and scaring, that can in turn close his airway off.

Another risk is that he won’t be able to cough up his secretions, which could be really uncomfortable for him.

This all scares the hell out of us! But we know we have to stay strong and keep having faith that it will all be okay in the future. It’s just so hard to stay focused sometimes when so much craziness has happened.

The specialists are waiting to hear back from colleagues overseas with their opinion, so I guess we will hold tight to see what the final decision is.

Theo’s in Theatre at the moment having another dilatation, we might be able to hopefully go home this afternoon.

This time of the year is very emotionally challenging for us, as this time 3 years ago the doctors told us Theo wasn’t going to make it. The amount of gratitude we have for being together as a family is beyond comprehension.
We are so looking forward to getting out of here and enjoying Christmas!
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Theo's had a little bit of bad luck, but also some good luck through out this admission.

His broviac line was clamped on the wrong section and formed a split, it was not picked up for 7 hours, in that time it grew a yeast bug. Yeast bugs are very dangerous as they can form damage in the heart, liver and eyes. Luckily an ultrasound showed that it hadn't spread, but to ensure it wouldn't travel to those areas the line had to be pulled out.

An ultrasound showed that a main vein in the left side of his neck, and one in his groin had re formed. This was the best news, as we have been told many times that there was a very slim chance that these access points would repair due to the amount of clotting. So he is booked in next Tuesday, when he gets his airway dilatation to have a central line re inserted. This puts us at ease, knowing he will have immediate access to put him under, if an acute airway obstruction arises.

To finish off the antibiotics that get rid of the infection, Theo has had 4 mid lines put in over the past week and a half, these lines go in small veins and can only last up to a week. Because Theo's veins have been accessed so many times, they kept tissuing. The last line tissued on Sunday, the anti's were meant to finish yesterday, so they cut them short a couple of days.
We are hoping that the length of antis was long enough to get rid of the infection, and he's all good now.

The plan was to go home today, but the carer training at the house, and carer help hadn't been organised. So one more sleep here, and were finally home tomorrow.

We can't wait to be home, and have some free will back!
But we're also a bit nervous due to not knowing if the carers are organised to work the nights. It's a bit scary knowing that we could potentially be walking back into the same situation we were in three and a half weeks ago. We're just kicking back in the Larwill for today, and hopefully, fingers crossed the hospital lets us know the plan with the carers. xx
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About three weeks ago, one of our carers decided to text us when she was on a plane, to let us know she was going to Europe. Our other Carer can only do a couple of nights a week, so we e pretty much been awake for 3 weeks, as the hospital that supply’s the respite can’t provide us with a back up plan. We feel so let down and saddened by the fact that a hospital can’t seem to send out a back up nurse, because it’s apparently not in their regulations, so then we suffer and have no quality of life. I’ve never really thought too much about the governments decisions, but when something effects you this badly, far out you start feeling unlucky to live in Australia.
Theo was admitted to hospital on Sunday, nine of us had any sleep in emergency. He has sepsis in his broviac line. This is due to saliva from his oesophagostomy bag leaking through the night, and getting under the dressing. This has happened because we didn’t wake up to manage his drainage ball on the oesophagostomy bag, due to being exhausted! It makes us really mad that we can’t get help! And it effects our sons health and life!
So yep Theos still in ICU. He’s still not his happy self, and his oxygen levels aren’t great. Fingers crossed tomorrow is a better day.
We are staying in the Larwil hotel that’s in the hospital. We wouldn’t have been able to do this with out you guys! Thank you so much! It puts our mind at ease being here, as we’re closer to Theo if something happens, and we get to catch up on some sleep!
P.S sorry for my rant, but just wanted to let you know where everything’s at :)
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We are so blown away with every ones support!
THANK YOU! So much!!!!
Theo had Theatre today, he made me so proud as he sat there cuddling me and telling the Anethatist how to do his job before he put him to sleep, he’s so brave.
We started to get a little worried while he was under as he’d been gone for a couple of hours. A specialist finally came out to let us know what was going on. They found a heap of sutures from when Theo was 8 months and the Trachea had a cardiac patch attached. They spent a lot of time carefully trying to pull the sutures out that would come out easily, the rest were cut back.
Once this was sorted, they dilated his Trachea to stretch out the narrowing, they did this by popping a balloon down then blowing it up, so the pressure stretches out the narrowing.
The risk of this procedure is that Theos Trachea can burst. So yeah every 1 to 2 weeks this happens. They specialists remind us before Theatre of the risks, I sit there thinking ‘yeah I know, you’ve told me like 200 times’. I know he has to tell us, but i just wish so badly that my baby didn’t have to be put in such a compromising situation.
Luck was on his side once again and everything went well. Theo woke up and made every one laugh as he acted like nothing had even happened.
He’s now sleeping peacefully on the ward.
So yeah it’s been another big day, we’re now hoping the night goes well, and we can get out early tomorrow so Josh can get to work.
There is an aura of calm around us today, I think it’s due to the fact the the financial pressures been taken off for a bit. We feel so lucky to have so many people around us that care. As most of you know, Josh and I are proud, independent and fairly private people, so this kind of stuff isn’t really up our ally. I guess what we’ve learnt this week is that it’s okay to accept help.
Loz and Meg did such a good job writing up the story, and setting up this go fund me gig. What great friends hey!
We will never forget everyone’s generosity! Thank you again!
Laurs & Josh
In recovery after Theatre today
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$29,735 of $30,000 goal

Raised by 209 people in 8 months
Created September 28, 2018
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