Jason's Journey
Jason was born on the 8th June 2007 at 31 weeks weighing 1kg. After his birth he went straight to the Neonatal ICU with his paediatrician. The most amazing thing for us was that as small as he was, he did not need to be ventilated, he was under a head box for about half an hour and that was it. I only managed to see him that afternoon when they wheeled my whole bed through to the NICU ward. My first thought was goodness he is tiny. He was attached to all sorts of monitors that were stuck on his tiny little body. It was very overwhelming being parents for the first time and seeing your TINY son lying there with all these tubes and wires everywhere on his little body and all these alarms going off. Eventually you get use to all the noise and alarms going off and know exactly what wire is for what purpose.
NICU was a real bumpy road for us. We had plenty of good days but plenty of bad days as well. We thought the birth would be the hardest part but that was only the beginning of all our struggles. On day 3 we were told by Jason's paediatrician that Jason was not well and his platelet levels had dropped to 15 which was critical. We were obviously shattered but it was in Jason and the paed’s hands and all we could do was watch and wait. Jason was given medicine to increase his platelet levels. He dropped weight to 980 grams. His platelet levels increased very slowly to 19, 28, 25, 40, 68, 117, 30 and then from then on they just climbed back into the normal ranges. Jason also battled with Jaundice like most prem babies, was on and off the lights constantly. One day we could see our baby's little eyes then the next day he was under the lights again.
We also battled with his haemoglobin levels dropping all the time and getting VERY low. He had to have 2 blood transfusions. Feeding wise and weight wise, things just went so slowly. Weigh day was twice weekly and we couldn't wait to get to the hospital to find out the weight. Every gram counted for us and I normally phoned before I got there. It was heart breaking to see how almost every second day they had to take blood in order to check his platelet levels, his haemoglobin levels, his CRP levels for infections etc. BUT slowly but surely our little boy started to get better and better. We watched parents coming in with their prem babies and leaving before us. Some were even just above Jason’s birth weight but they just managed to feed nicely and leave so soon. Jason battled to feed and gain weight. It was so funny how we got so excited to feed him and feeding consisted of holding the syringe with the NG (naso gastric) tube attached and his breast milk goes down his nose into his tummy. But I was there for every feed, every three hours. We only started feeding on day 3 and that started at 3mls every 3 hours. When he got sick, that was a setback, the milk was decreased and weight gain was slower. Jason battled to latch and had difficulty with his sucking reflex. We clearly remember the NICU nurses walking and talking to Jason while they tried to get him to bottle feed. He took forever to drink small volumes.
A few days before it was time to be discharged, a groin hernia developed and we had to have an operation to fix that. Because we had left the NICU ward we had to go into the isolation ward.
A few days before it was time to be discharged, a groin hernia developed and we had to have an operation to fix that. Because we had left the NICU ward we had to go into the isolation ward.
Our journey back to hospital started almost immediately, we were back 4 days later for an operation on a groin hernia on the other side. We have since been back to various hospitals a further 14 or 15 times for various reasons. Jason has had pneumonia 4 times, broncolitus 8 times, we were admitted for ng (naso gastric) feeding for weight gain, an endoscope, the Nissen Fundoplication, hernia repair and G tube placement operation and a further endoscope, grommets in, adenoids and tonsils out. Jason was diagnosed with severe silent reflux in November 2007. As Jason was only 2.9kgs then we decided against having the operation due to the risks involved and chose to rather try helping his reflux by changing his formula and medication. His reflux just got worse and he would not drink and eat enough. He was basically just having enough to survive. We had many sleepless nights trying to get him to drink his bottles and had to resort to syringing milk into his mouth at stages. We went home with an NG (naso gastric) tube as well. His reflux worsened in July 2008 and his eating worsened. We saw the paediatric surgeon again and decided to have the operation. We were told that he was malnourished and at the time of the operation he was 15 months and 5.3kgs. We didn't realize the extent of his silent reflux but the paediatric surgeon informed us that Jason's oesophagus was rawly burnt from the acid reflux. Because Jason has such a high pain threshold, he didn't complain or scream like a normal child would.
During the first attempt to have his tonsils and adenoids out and grommets in, which was in October 2009, they had complications with his oxygen levels dropping drastically. They had to abandon the operation and we ended up in ICU for the night to monitor his vitals. Doctors did bloods and chest x-ray. He had a little fluid on the lungs but didn’t seem to be something that would cause such a drastic drop like that. In November 2009 we went in again for the op but a day earlier to be monitored, saw the cardiologist, heart was perfectly fine, did bloods, all clear, took chest x-ray, all clear. During the op the next day, same thing happened, oxygen levels dropped again but they managed to make a plan with the ng tube and inserted another hole so the oxygen got to the left lung. We ended up in hospital for 7 days because of complications with Jason gagging non-stop. They did two chest CT scans, a brain CT and a brain MRI to try and determine why he was gagging so much. The brain CT and brain MRI picked up an area of demyelination.
We have recently been to see a neurologist to assess Jason and also to discuss the MRI results. The neurologist feels that all Jason's symptoms may have a common cause for these problems and he would like to investigate demyelinating conditions as well as syndromes. He has requested various bloods, chromosome and metabolic tests and we have made an application to our medical aid to see whether they will cover these tests as they are very costly (R12,478.09 written quotes).
We have recently been to see a neurologist to assess Jason and also to discuss the MRI results. The neurologist feels that all Jason's symptoms may have a common cause for these problems and he would like to investigate demyelinating conditions as well as syndromes. He has requested various bloods, chromosome and metabolic tests and we have made an application to our medical aid to see whether they will cover these tests as they are very costly (R12,478.09 written quotes).
Complications we are having
Will not eat or drink anything since the operation in September 2008 – all solids and liquids given via G tube in tummy.
He will put NOTHING except a dummy in his mouth.
Talking hasn’t progressed, can say mama and daddy. Lots of babbling and baby talk but no words.
Understanding seems very behind e.g. waving goodbye, fetching things etc.
Gagging – can’t vomit since the Nissan and he gags almost daily.
Oxygen stats dropping during operations – unexplained.
Food absorption - it seems like he isn’t absorbing his food because he has chronic diarrhoea.
Weight gain is very slow.
Gets sick very easily.
Very high pain threshold, hardly cries when he hurts himself.
Never had tears.
He will put NOTHING except a dummy in his mouth.
Talking hasn’t progressed, can say mama and daddy. Lots of babbling and baby talk but no words.
Understanding seems very behind e.g. waving goodbye, fetching things etc.
Gagging – can’t vomit since the Nissan and he gags almost daily.
Oxygen stats dropping during operations – unexplained.
Food absorption - it seems like he isn’t absorbing his food because he has chronic diarrhoea.
Weight gain is very slow.
Gets sick very easily.
Very high pain threshold, hardly cries when he hurts himself.
Never had tears.
Who is Jason
Jason is a true miracle and gift from God. Through everything he has been through in his little life, he is the happiest little boy. He has many favourite things to do; his all time favourite is the beach. He LOVES water, is a true water baby like his daddy. He loves to draw, loves to read and is a very happy energetic little man. He goes to a little play school 3 times a week which he has been going to for 4 months now and absolutely loves his school and loves playing with all his friends. He is a great climber, will climb on everything. Jungle gyms are his favourite and he can't wait to get to school to play there. He loves his doggies and loves to play ball with them and also likes to empty their water bowl all over himself. We often find onions and gems in the garden from Jason throwing "balls" to the dogs.
He has a wonderful hearty laugh and is very affectionate. He loves his granny and grandpa's very much. Loves to go on holiday to visit his granny and grandpa down the South Coast. Is very lucky to see his other granny and grandpa in Durban North often and loves to play in their pool and steal grandpa's race book.
He is growing day by day and is learning new things every day. When aeroplanes fly over he now he knows where they are and points up to the sky. He doesn't talk yet but has his own little happy language and we are sure speech will develop soon.
He has a wonderful hearty laugh and is very affectionate. He loves his granny and grandpa's very much. Loves to go on holiday to visit his granny and grandpa down the South Coast. Is very lucky to see his other granny and grandpa in Durban North often and loves to play in their pool and steal grandpa's race book.
He is growing day by day and is learning new things every day. When aeroplanes fly over he now he knows where they are and points up to the sky. He doesn't talk yet but has his own little happy language and we are sure speech will develop soon.
