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My boy walks!

by Jen heart mum on 14 March 2011

Hi. Long time no update. What's new? Well at 15 months, my very precious son started walking and the week after crawling. Both are major events in any parents lives but in ours it feels extra special. He is getting a bit bluer and wheezy when he's moving but after speaking to his cardiologist, it's to be expected (especially after he contracted RSV which has messed with his lungs). We had the cardiology outpatients last month too and the leak in one of his valves is getting a tiny bit worse. But the leaks are both still classed as minimal and no one appears worried. It will never stop me worrying mind! But they don't want to see us until August so that means a full 6 months again between check ups. 


The winter was pretty tough on us at the begining. We were in hospital every month for various ailments and by Christmas, his oxygen levels were down to 60%. The lower limit without intervention is supposed to be 75% but it was decided as he was not in respiratery distress to just wait and see. By the New Year he was back up into the 70's again and a couple of weeks after it was in the 80's. My baby also managed to contract bronchiolitis yet again and our GP insisted we go into hospital (against our better judgement as swine flu was rife). But my boy is showing me what a darn good fighter he is and overcame this within a week. Bearing in mind that a year previously the same virus put us in hospital for a month and was borderline for going back into the ICU. 


So the future..... We keep on going. The children's cardiac services are most likely going to get a huge overhaul. Still no surgery planned until his last "fix"= The Fontan (open heart surgery). I have to try and get my little man off the bottle and keep his weight going up. Hope his medication gets changed in the next year to a once daily BP med instead of a twice daily which used to be three times a day. My final words until I bblog again- HLHS is a monster. It's one though which so far my baby is winning the war with. There is still no cure. That sucks!


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