Taine’s Story
Taine was born at 29weeks (11 wks premature) and weighed 1100 grams in King Edward Hospital, we were told that he had an Osophageal Artresia which meant his food pipe was not connected to his stomach so he could not swallow any thing. The doctors told me this is probably why he came early.
Once Taine was born I got to hold him for it felt like only 5 seconds and he was rushed off to PMH Neonates ward. I could not believe this was happening to us this was supposed to be one of the most joyous times of our lives, yet Richard and I were both so scared and sad.
I got some rest, while Richard went over to see Taine, he spent hours there just holding his little tiny fingers. I woke up about 3am in the morning distressed and confused and rang PMH to see how my little man was doing and remember feeling numb all over.
The next morning I was up early, ready waiting for Richard to take me to see Taine, he was in a humid crib due to premature ness and jaundice and had a tube put in his mouth so that the nurse could flush it out regularly because he could not swallow. A gastrostamy tube was placed in his stomach so that he could be fed. He was also on CPAP to help him breathe properly. He was so tiny and frail I was so scared to touch him.
After just over a month Taine had an operation to have his oesophacous repaired and joined together which meant he could now take things down his mouth. While this was all happening they found out he have a heart condition which they call Tetralogy of Fallot. This caused him to have what they called blue episodes which used to scare me so much; his saturations would drop so low and the machines would just beep and go off all day. We had a meeting with Dr Ramsey and he told us our little man was to have open heart surgery to fix his heart. What was happening to us this just could not be right, it just didn’t seem fair. As you all know this is one of the hardest things to hear.
Because Taine was so little they wanted him to put on weight before they did the full heart repair. So they did an operation which meant putting a BT shunt from an artery from his left arm to help the blood from mixing and causing him to turn blue. After 6 hours in surgery and a couple of days in ICU he recovered extremely well and was told we could go home shortly, which was something we were really looking forward to, as we had been in the Neonatal Unit for nearly 5 months. The day came to go home and we all had mixed feelings – happy, sad and scared all at the same time. Well it was great – we went home for 4 weeks, but something was not right, we bought Taine back into PMH and after another small operation and a MRI scan the surgeons found that an aneurism had grown around the shunt and was blocking it, this stopping it from working and he was starting to turn blue again.
Bad news we had to have another operation.
This one was not so good; after 8 hours in surgery the doctors had problems fixing the original shunt and tried to do a right sided one, BUT this did not work either as Taine’s saturations kept dropping. They finally decided to do a central shunt; the problem was they could not close his chest up after it because he had swollen up due to the surgery. This time Taine was in ICU for over a week and was kept on a lot of drugs and ventilated until he could fend for himself. Finally the day came that he was strong enough to come off all of the machines and was sent down to the cardiac ward to recover some more. A week later, guess what we could go home.
On May 16th 2006 at 16 months old Taine was booked in to get his full heart repaired, we were so scared but thought this would be the last time, and we could then get on with a normal life. Little did we know that was not going to happen?
Taine got thru the Tetralogy repair pretty quick and only stayed in ICU for a few days. BUT he kept getting fluid built up called Chylothorax fluid in his lungs mainly the right one which was causing him problems to breathe. He was kept in hospital for weeks with pigtail drains in each side of his chest to drain any fluid out. Every time we thought it was all Ok the fluid kept returning. He was put on a no fat diet and a special formula called Monogen to help stop it collecting around his lungs. All started to look good so we went home, but not for too long we were back in PMH regularly getting them drained.
So in Late August 2007 it came to a point where a decision had to me made on how to fix this problem, so we were off to see David Andrews yet again, and he discussed the option of cutting into the right side of Taine’s chest and putting Talcum powder (yep can you believe it) in, to basically stick his lung against the wall of his chest to stop the accumulation of fluid.
So Taine went into surgery again, this procedure did not take as long so when David Andrews came to see us so quickly we thought it was great. He said it looked like all went ok. Taine was again taken to ICU.
The first couple of days Taine was doing ok, but on Fathers day which was also my mums 60th birthday I left the hospital for a couple of hours to celebrate with my family as much as you can when you child is in hospital (it never leaves you mind). I then received a call from Richard saying I should get back to the hospital, I took off straight away and don’t really remember how I got there. I new something was wrong.
When I returned to the hospital Dr Duncan was with Richard talking to him, my whole body just fell to the floor I could not believe what he was saying, he was telling us that Taines liver and kidneys had gone into failure and that he most probably not survive 24 hours. I have never felt so guilty in my life for leaving him, I know things would not have been different if I was there but the guilt just hit me so hard. I rushed to Taines side and cried for hours telling him it was going to be all ok. Richard rang our parents and some close friends. They all came rushing up to support us, I don’t really remember seeing anyone I was just fixated on Taine. This was the beginning of what seemed to be the longest nights of our lives. I could not leave him.
Taine made it thru that night; he was put on Kidney dialysis and given blood and platelets it seemed like constantly. Taine made it thru the next day then the next, Richard and I, my parents and friends sat by his side, day in day out reading and talking to him. Watching his favourite shows and singing his favourite songs, I knew he could hear us.
Then one night we were woken up at 4am in the morning and told he that he was bleeding, We raced in to see him and could not believe our eyes he had blood pouring out of his nose and mouth it was awful to see, and Richard and I both thought that this was it,we were going to lose our little boy, we were both so numb I kept thinking what will I do with out him I wont be able to cope. I went and spoke to Taine and said if it was getting too hard it was ok to go (that was the hardest thing I have ever done in my life).
But he fought thru it amasingly and made it thru that night also, he was not ready thank god.
Then on my birthday while I was sitting by his bedside, Taine did a wee, it was the best birthday present ever. I had never been so happy to see wee in my life. Within the next few days his kidneys starting slowly working and he was taken off dialysis, finally something was going right.
Just like a miracle his kidneys and liver starting improving and our little boy was back with us. After 5 weeks in intensive care we went to the ward. Taine was then like a new born baby and we had to start rehab to try and get him to move just the smallest parts of his body. Within a couple of months Taine was crawling again and showing great improvement.
Due to the damaged to Taine’s brain whilst he was very ill in intensive care he has now got epilepsy and is on medication for this which seems to be slowly coming under control.
It has been a long road back with rehabilitation but Taine is pretty much back to where he was before the operation and has just starting walking. Developmentally he is about a 14 month old, however he is in age 2 ½ ,but with such determination we are sure he will catch up pretty quick.
We are so grateful to the Intensive Care Unit and all the Cardiac and Heartkids Staff for all their support and help thru this time it was the hardest thing we have had to go thru.
Taine still has to have more heart surgery but we are hoping it will be a lot easier.