PATCHES HEART GROUP

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Luke's Story

Diagnosis - TOF ( Tetralogy of fallots ) & Pulmonary stenosis

My pregnancy had been a very smooth pregnancy up untill my 2012 week scan. On the 10th of October 2010 thngs changed. We found out we were having a boy, as the scan continued the sonographer face changed. We were told that she couldn't see a certain valve in the babys heart but not to worry and we would see a consulant at a later date. As soon as we had seen the 1st consultant I knew this was not good. We found out that Luke had a pulmonary stenosis an we were to be refered to a team from the women's and alderhey.

 A week later I went to the women's hospital an our world came crashing down. Luke had Tetrology of fallots and possibly a genetic disorder that can go with the condition 22qdeletion. We were offered a termination but there was no way I was giving up my baby while he was still fighting I sure as hell would an what ever we faced when he was born we would deal with.

 On the 7th march I went back to the women's for an induction. An on the 8th march at 6:45am my beautiful son came into the world an he was pink an breathing. We had quick cuddles an then he was whisked to scbu. He had a few issues with feeding an his sats had started to drop but they were not concerned.

 After a week at the women's Luke was transferred to Arrowe park to establish feeding. A week later I had my baby home for the first time. It was wonderful, scary an tiring. Luke took an hour to feed an it felt as soon as he'd finished one bottle it would be time to start another one. After 2 weeks at home Luke had his 1st spell his sats dropped to 70 an was a horrid blue colour. After being monitered at Arrowe park for a couple of hours we was sent home. As the weekend progressed Luke got no better an Monday we called the sats nurse out and was shocked his sats had gone to 65.

 A phone call was made an we were sent straight to alderhey. He was started on propanalol an sats went to 85 the drs were happy an we was sent home. The drugs didn't last for long 2 weeks later he dipped again an we was transferred to alderhey. After bein on oxygen for 2 days Luke was rushed to theater for a shunt which after some complications in surgery he pulled through. And after 8 weekdays he came home again. A week later he went back in for a peg.

 After that life was good he put weight on an did fairly well. Don't get me wrong there was not a week that went by that we didn't have an appointment with someone but my son was home an doing ok. Untill the beginning of September 2011 he started to go down hill again he was admitted for an mri an they found The pulmonary arteries had not grown even with the shunt.

 3 weeks later we was back alderhey for a full repair 14 hours later he was given back to us on icu. Critical but stable. That was a monday. Tuesday morning he was awake an not happy. He looked like Freddie kruger had him it was destroying but the drs seemed happy an moved him to the ward that day much to the disaproval of me an his dad. Turns out we was right coz within 24 hours he was back in theatre for a life saving procedure. Luke had had a massive hemothorax an was really not a well baby. Horrified doesn't describe how we felt. I really thought that was it for my baby....

 However on the 8th of march 2012 we were able to celebrate lukes 1st birthday. It's not been easy but I'm so happy that we didn't take that termination as apart from god heart an the amount of infections an trips to the doctors I would not give him up for the world. My son is my hero xxxxx

written by Sarah Graves -  Lukes mummy

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