Riley’s Story

“When I was 18 weeks pregnant, I had the routine ultra-sound, which found our baby was growing with a multi-cystic kidney.  This meant the baby’s left kidney was growing with cysts surrounding it, and possibly in it.

We were referred to a specialist in Wellington and were advised our baby would probably need surgery after birth to remove the multi-cystic kidney.

We had lots of scans following, both in Palmerston North & Wellington.  At 37 weeks gestation, our baby stopped growing.  The umbilical cord only had two vessels instead of three, which is common with multi-cystic pregnancies, and this meant our baby wasn’t receiving the full amount of goodies he or she needed to grow.

Our midwife decided to induce us three weeks early. Our wee precious boy was delivered after a 36-hour labor!  He was rushed down to neo-nate’s.  I finally got to hold my new baby when he was an hour old.  I was so exhausted that I couldn’t see him straight, but he was here in the world, weighing 5pd3ozs.

Riley stayed in neo-nates, and I stayed upstairs in maternity frantically trying to get my milk to come in and pumping colostrum to take down for the nurses to give him. He needed constant heel pricks, and the blue light for jaundice.

Riley had a scan when he was two days old to check his multi-cystic kidney.  On day four, our pediatrician came to see me.  I was alone at the time.  He told me the kidney, or mass as he was now calling it, was 9cm in diameter! On a wee 5pd baby it was very noticeable and protruded a lot.  The pediatrician told me they now thought it was a tumor, and we needed to make preparations to go to Wellington the following day.

My world went black. I had only just been keeping it together with dealing with a prem baby with a multi-cystic kidney, and now we were looking at something far bigger.  I rushed out to phone my husband and sister, who walked out of the elevator as I was waiting for it.  I fell into my husband’s arms and told him the news.

At first they were prepping the helicopter to take us, then the ambulance, but after much persistence, I managed to talk the powers that be, that we were capable of driving our baby ourselves.  Amongst the madness, I wanted some normality.  I wanted us to drive Riley away from the hospital as if we were going home.

We arrived at Wellington neo-nate’s, and Riley had another scan.  With their high-tech 3D scanner, they could see that it was a multi-cystic kidney – the biggest the doctor had ever seen in fact! They set about doing some horrendous tests on our poor wee boy to test if there was any function in the kidney.  I couldn’t go in with him, but my husband did.  The screams I heard through the doors that my baby boy made during one of the tests bought me to my knees.  They put a catheter up his penis to inject dye to see if it went through his bad kidney to check for function and any reflux.  I have never felt so relieved to hold my boy, and I made him a promise that day I would never let anything horrendous happen like that again.  The specialist decided Riley was too small to operate on, with removing such a large mass.  The multi-cystic kidney had no function, and had four very large cysts on it, while his right kidney was as perfect as possible!  We were sent home to “fatten him up” (the specialist’s words!) and were to come back when Riley was three months old, to remove the kidney and cysts. Riley was on daily antibiotics for the first three months of his life, to ward off any possibility of infection with the good kidney.

At three months old, we headed back to Wellington. Riley was a star baby, so cruisy, and so smiley!  He was a joy to have around, and I had totally fallen in love with our wee man.  Even though we couldn’t feed him for six hours prior to surgery, he wasn’t grizzly. He loved being walked around and gave the nurses big smiles. We walked him into theatre when it was time, and prepared to leave him in the hands of the surgical team. Fate was in our hands though, as the surgeon couldn’t find Riley’s old ultra-sounds. While someone went looking for them, the surgeon had a feel around where the multi-cystic kidney was.  He couldn’t feel the large mass.  We hadn’t been noticing it either, but we thought it was because Riley had managed to pile on a lot of weight.

The surgeon decided he needed to do a scan there and then, so 13 of us – all the theatre staff wanted to look too – piled into a small room, where on the screen in front of us showed a much smaller mass.  Riley’s amazing body was dissolving his bad kidney.  So, surgery was cancelled and we were sent home.

At 12 months old when Riley had another scan, it showed the mass had been totally dissolved.  Riley’s right kidney is slightly larger than normal and is doing a wonderful job.

Naively I thought that was all of the drama for our boy over.  He’d had his “thing” in life.  He had a pretty impressive story to tell in the future. Life was on the up.

Except for…

Every time Riley got a cold, he would get a nasty cough & start struggling for air.  Riley’s first asthma attack (although it wasn’t diagnosed as asthma at this stage as they don’t tend to diagnose asthma under three) was at 20 months of age.  That was the first time he was admitted into hospital and the first time to be given prednisone (steroid).  Riley had another admission when he was 23 months old, and lots of episodes in between where he’d be given steroid, but we weren’t admitted.

At age two and a half, they diagnosed asthma and started Riley on the preventative Flixatide.  Riley was on Ventolin (the blue inhaler) when needed, Flixatide daily & Redipred or Prednisone Steroid.

Throughout those years, Riley’s asthma had been constant, but we were able to manage it with the GP and at home.  Most winters Riley would require more than one dose of steroid, and the amount of preventative would increase.  At age eight, Riley was trialed for the preventative Seretide.  This helped ease his symptoms somewhat.

We were starting to notice Riley had developed a lot of triggers for his asthma. In the earlier years, it was just viral induced.  Now, animals, hay-fever, sudden temperature drops and dust all trigger him.  There were no reasons for this either, so that started to make us more nervous about where he could go and what he could do.  We had to monitor whose houses Riley goes to, which can affect friend’s sleepovers etc.  He was pretty understanding, as were most of his friends and their parents.

From 2012-2014 Riley had seven admissions for asthma.  With one of the admissions in 2013, he wasn’t showing any signs of improvement, and went for a 24-hour period with only managing to stretch out having his blue inhaler to every 1.5hrs.

He was on oxygen, and nothing was working.  He was a very sick little man, and was really struggling to breathe. The doctor started talking about doing an IV if there was still no progress in the next few hours. I had noticed his blue inhaler had a different brand name on it.  I thought we used the Ventolin brand, but I was then informed that Ventolin wasn’t subsidized so the chemist would’ve changed from the Ventolin brand to the subsidized brand.  I was unaware of this change.  The subsidized brand was what the hospital uses.  I don’t know what made me say it, but I asked for Ventolin, as that is what he used to be on.   After being told there is no difference & that both inhalers are the same except the subsidized one is alcohol based & Ventolin isn’t, my gut instinct was to say, “No, Riley needs Ventolin”.  My husband filled a script for me with Ventolin, and brought it up.  Within hours Riley was four hourly between inhalers!

There is no medical evidence for this, but there is anecdotal evidence in other patients I’ve heard of, that Ventolin works better on some patients.  Riley does respond better to Ventolin and now is only treated with that brand of blue inhaler.

Since 2013, Riley has been on Ventolin when needed, Atrovent when needed, Seretide Preventative six times a day, and Prednisone Steroid when needed.

After battling many doctors and nurses with the hospital admissions, and nearly each one telling us to do something differently, we wrote our own asthma Plan for him.  Riley’s peadiatrician, whom we’ve been seeing since 2012, endorsed this.  Now when a doctor sees Riley, or when he is at school or away from us, this asthma plan is to be followed so everyone is on the same page about which stage he is at.

Riley’s asthma would come on very fast, and wasn’t predictable.  Now that he is older it is easier for him to understand how he is feeling and when he needs to get help, or take a break, but it’s taken many years and some very scary scenarios to get to this point.

In 2015, Riley started Montelukast, which is a tablet he takes daily.  This has been life changing for him, and for us. Almost instantly, Riley was a different boy.

His asthma episodes became fewer, and he would respond to the Ventolin so much faster, which meant less and less steroid.  In October 2016, it had been a year since his last dose of steroid. Unfortunately, a bad head cold meant he needed two days worth of steroid this October, but we still celebrated the year of not having it. Next year, it will be over a year we hope!

Riley is a very active, sport loving boy. Unfortunately, his sport has suffered through the years, with him not being able to participate, or having to come off the field.  In 2014, Riley had a chest infection for three months which meant he had to give up karate. Riley loves running, touch rugby and hockey, playing both summer and winter. He also loves rugby, but due to only having one kidney, he’s never played, although he does dream about becoming an international rugby referee.  In 2016, Riley’s uncle, who is a senior referee, mentored Riley for the rugby season with refereeing, which he loved.

We try as a family to not let asthma dictate our lives, but sometimes it does.  I only started working five days a week this year, so if Riley required time at home, my husband and I would tag-team with his care or I could take the time off needed if we were in hospital, or if Riley was too sick for me not to be around.

In 2013, Riley had a total of 10 weeks off school, and in 2014 he had a total of eight weeks off school.  We are very fortunate Riley is very studious and doesn’t let himself get behind with his work.  I make sure there is a clear line of communication between the teacher/s and me so I can work at home for Riley, and he can have understanding at school.

Asthma has taught our family about being flexible and coping with last minute changes to our plans, about being tough skinned when we’re being judged for not doing something, or for Riley not being somewhere.

Asthma has taught us to be patient, and to appreciate the days and weeks when Riley isn’t coughing and wheezing.  Asthma has taught me, as Riley’s Mum to function on months worth of broken sleep and to just get on with each day.  Asthma has taught us a lot, and I am grateful for those lessons, as we have a greater appreciation for life, and try not to take each day for granted.”

-Laurel, Riley’s mum

One in seven New Zealand children live with asthma, and a huge 550,000 school days are lost every year because of this condition.

Every year, a devastating 70 Kiwis die from asthma.

Cure Kids are proud to have supported research into finding better treatments and cures for asthma. Cure Kids co-funded a trial testing the efficacy of a new smart-inhaler, SmartTrack, which uses ringtones as cues to children on asthma medication if they’ve missed a dose.

Preventive medication, when taken consistently, improves overall health and reduces the need for reliever medication. SmartTrack also has the added benefit of providing detailed feedback to medical practitioners about patterns of use. It is great tool to improve asthma treatment, and reduce the number of school days missed.

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