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Blaze's Story
 
 
 
We will attempt to give you a little history about him and how we got to this stage and where we go from here. This is a long and extremely hard journey with many rocky paths yet to come-but we face them in the knowledge that Blaze is and always will be one of our children and we will fight on with him-he is very precious to us and no matter what he faces we will be with him-side by side along with our family ,friends and medical professionals.
 
Blaze has recently had surgery-in September 2010-he had a STING procedure which was done to try and reduce the severe reflux and hydronephrosis that he suffers-check our What is Hydronephrosis? page
 
Blaze was born with this condition-before he was born it was diagnosed during ante natal scans-I was very very ill during my pregnancy and in fact Blaze started as a twin and we tragically lost one. Blaze survived and we knew even then this wee man was a fighter. We had a terrible delivery and he was whisked off the moment he was born to be given drugs and positive pressure to make him take those first vital breaths. We couldn't hold him for hours and it was heart breaking but he made it through.
 
At 10 days old he was admitted to Antrim Area Hospital after a visit with the out of hours doctor-with a severe Urine Infection (UTI) and was subjected to lumbar punctures and countless failed attempts at putting a canula line in for IV drugs.
At 13 days old we were first told that Blaze's Kidneys and ureters were wider than normal-and that he had kidney reflux.
 
On 15th November-aged 4 weeks old he had his first mi curating cystogram. After it I was told that there was a scale for severity ranging from 1-least severe to 5-most severe, and that Blaze was a 4-5. Blaze was put under the care of community nurses who visited him at home to monitor his weight and height, medicine use and condition.
 
In Blaze's first 6 weeks of life he was in hospital 5 times all with severe UTI's requiring IV drugs. We were told due to the severity of his UTI's he could have ended up with heart problems,brain problems, meningitus or even that his problem may be that he had spina bifida. It was a very worrying and frightening time.
 
Blaze had a very traumatic and eventful 6 weeks of life. We would like to take this opportunity to Thank the Doctors and  Nurses In Antrim Area Hospital-who looked after him in this time. Especially ward A2, in which we lived the entire time-and who got to know myself and Blaze very well.
 
 
Then Thankfully the Gods intervened and we were sent to see Mr Alan Bailie in the Royal Belfast Hospital For Sick Children-Belfast. We were told we were going to see him about a possible circumcision as this would reduce infections for Blaze.
 
That day was the day our worlds both fell apart ,and we were extremely thankful for Mr Bailie's expert knowledge and quick decision making. Blaze was admitted to the children's hospital that very same day- we were told Blaze would have to have surgery in a few days time in order to prevent his condition worsening. I will never forget the words Mr Bailie said to me that day. "this wee man is in severe trouble". A catheter was then used immediately to help prevent Blaze's kidneys from getting any worse-to help relieve the pressure on his kidneys and to allow the infection to drain away as quickly as possible.
 
It was now the 6th December 2007-Blaze and I were in an isolation ward meaning we had no visitors and Blaze was very ill-but scans showed his spine was fine (conditions like Blaze's ,are often found in spina bifida patients), his kidney function was good but that his kidneys were badly swollen and mis-shapen. He was on IV drugs and a drip.
 
We were moved to the infant surgical unit in preparation for surgery. This is a specialist 6 bed unit within the main surgical ward-Barbour ward.Blaze was losing weight, not sleeping and very upset at this stage. We had spent a lot of time in hospital-both in Antrim and Belfast.
 
This is the first time we were given the names of Blaze's conditions. Hydronephrosis and vesico-ureteric reflux.
 
Blaze was only 7 weeks old at this stage-and a condition that his dad has-called malignant hyperpyrexia (a life threatening allergy to general anaesthetic) complicated matters-but we prepared to send our tiny precious little man off to theatre. He was to have an operation called a vesicostomy-a hole made through his tummy directly into his bladder- this was to take the building pressure off his bladder and hopefully from his kidneys. 
So On 11th December 2007 was when he was went for surgery-feeling sick and distraught we handed Blaze over to the surgeons knowing that this had to happen but feeling ready to grab him and run away. But Blaze made it through-although not all went to plan-Blaze's bladder prolapsed through the stoma site which made his bladder stick through and sit on his tummy. It was horrifying-though we were told it may just have been the stress of the operation and it may go back inside his body. It infact did not and Blaze was fitted with a catheter into his stoma-which he still has to this day 3 years on. Mr Bailie said Blaze's bladder looked quite healthy which was a positive.
 
His bladder continued to pop in and out of his stoma. A stoma nurse-Emma Kelly-came to visit Blaze and showed me how to look after the site. Blaze was no longer allowed to bath with bubbles or have powder or creams.Given cream for his skin as it already looked very sore and red.
We were going to be allowed to go home 13th December. Christmas hadn't happened in our house yet and it was a relief to get out to be with our family and especially our daughter Amber.
But on 20th December Blaze's catheter stopped draining and we were admitted yet again. His potassium level was very low and was bleeding profusely from his stoma site.He had yet another urine infection. He had more ultra sound scans but they showed his kidneys were worse again. They managed to get his catheter draining properly and gave Blaze anti-biotics and potassim in his feeds. So finally we get home on 22nd December. Community nurses were going to visit him every 3-4 days at home to monitor his condition.
Blaze had his first Christmas at home!
 
Yet on 31st December it all started again-his catheter stopped draining-the hospital said to bring him up. They flushed his catheter to get it working.
 
2nd January tests showed that Blazes Kidneys still had debris and fluid but looked slightly reduced so the catheter and bag would stay in for 2-3 years to try to continue to help. We were told at this stage that Blaze would need to attend the Royal Childrens Hospital for at least the next 15 years.So I was trained to flush and change his catheter. And also to change the water in the tiny balloon that sits inside the bladder to prevent the catheter from slipping out. It was a very scary time as doing any kind of medical procedure on your own child is both odd and heart breaking. But I wanted to be able to look after my own baby-nurses doing it was one thing-But I am his mother and I wanted to do all baby needed.
 
 
The time after this was a very tense time for us and Blaze. There were a lot of problems initially with his catheter. Partly because it took a while for me to get used to being able to do all required when looking after a cathter.And then parrtly because Blaze had a lot of medical issues going on. He had a lot of blood and stained urine-lots of infections and potassium problems and issues with the catheter draining for a while. Of course these things are second nature now and if we see blood stains or lumps no longer panic and can deal with it.
 
 From the start of the year till the 17th Jan-Blaze had been at the doctors, seen a community nurse at home or had been up at hospital 8 times and twice had been kept in.
 
On the 25th Jan Blaze had his first MAG 3 scan. This showed that his left kidney was not draining as well as the right. We were also told that his kidneys were both very baggy. This is also when Mr Bailie told us that he thought Blaze may have a kink in the tube from his kidney to his bladder.
 
At 21 weeks old and having had 9 infections in his short life, we went to see Dr. Simkova, a Nephrologist-a Kidney Specialist. Dr. Simkova was going to try and control Blaze's infecton's, as he has so many in a short period of time. It was the 5th March and we didnt realise at this time but we were going to be seeing a lot of Dr Simkova.
 
From the 5th-19th March Blaze had 2 more urine infections-Dr Simkova called us often at home to check on Blaze and kept changing his medicine to try to help him.
He was violently ill-and had yeast infections also-due to the amount of anti-biotics he was on. But the night of the 19th Blaze had become worrying ill. He slept constantly, waking only to violently vomit. He could keep no fluid in and was very lethargic. We took him straight to the Children's A+E. Even on the car journey there we had to stop 3 times to change him as he had thrown up all over himself and passed out immediately after doing so. He was admitted there and then to Musgrave Ward. They started him on IV drugs. They thought at this point that it was the urine infection making him so ill.
However, results from tests came back showing Blaze has ESBL (Extended Spectrum Beta-Lactamase). This is resistant to a lot of drugs, and very hard to treat. I was told Blaze most likely had this because he was in and out of hospital so much and was already ill. He was put into isolation as it is highly infectious, and told he would need at least 5 days of IV drugs.The only drug that could help him was meropenum. He spent many days not being able to keep anything in and was on drip fluids. They had to shave his head in several places to reposition the canula. It was a very scary time. Blaze spent most of the time sleeping. Dr Simkova and the staff of Musgrave ward were fantastic to Blaze and us. Dr Simkova came every single day to see Blaze- we also had may visits from Blaze's surgical team-including Mr Bailie and Evelyn (a surgeon who had many times dealt with Blaze). After 9 days and many tests and scans Baze was finally on the mend. It was a time we were frightened we might lose Blaze. He was so seriously ill-I always stayed with Blaze anytime he was in hospital but Darren stayed this time too-often sleeping on the floor,just in case anything happened or Blaze got any worse. Blaze being the tough fighter he is-started to get better and eventually began to wake up and feed-though at times not enough so was kept on drip feeds-but slowly he began to get improve. More ultra sound scans showed Blaze's kidneys and ureters were dilated-but the decision was made to take his catheter out for a while to try and help with the constant infection Blaze was haing to deal with.
 
29th April 2008 - Blaze had been doing well for a month. He went back into theatre for retrograde studieson his kidneys and tubes-it was quite rough on him-as when he was in theatre they found it hard to get a vein on Blaze and he ended up with a central line in. Blaze's wee veins have gone through so much that they just dont take canulas very well now. This was the first time that Mr Bailie had told us that Blaze may need surgery on his kidney-a pyleoplasty. As he thought Blaze's ureters had a kink in them. Blaze was a very long time in recovery-from 9-1.30-very worrying but he cam through it well-he is such a wee fighter.
 
17th May 2008-This was the first time we raised money to donate to the hospital. We held a praise supper at a relatives church-I gave a bit of a talk about Blaze and what he had gone through and why we wanted to raise money. That night alone we raised £1300. Unbelievable! The donations from that night along with other money raised-we donated £2800 to the Childrens Renal Unit in the Royal Belfast Hospital for Sick Children. It was a great amount to raise on our first attempt. Although it is a great amount we realise that its only a drop in the ocean compared to what the hospital could really do with.
 
Story continued on Blazes Story Page 2 - Click Here