Posted , 5 users are following.
Our son was diagnosed with Tetralogy of fallot 6 weeks ago at 3 and a half months after a trip to the GP with a bad cough and chest infection. We were sent to our local hospital from the GP surgery and then sent to Alder Hey the next day where he was diagnosed after a scan. He hasn't had any blue spells and feeds really well - he is a very good weight for his age. We came home from hospital after 2 weeks of monitoring and he is now on propranalol 3 times a day. He has been back to clinic since and they were pleased with him and hope to wait until he is 12 months before doing surgery. He will need to go back to clinic every 6-8 weeks. He also has a nurse visit at home every 2 weeks to check his SATS are ok and so far they have been fine.
The thing is, even though the doctors are all pleased with him and happy for him to carry on at home - I just can't stop worrying about it. We have put him in his own room at night now and I feel so guilty! I lie awake wondering if he is ok and checking on him all the time. Every time he crys I worry thet he's having a spell or that he might turn blue. I was so happy when we came home from hospital but it's just hit me all of a sudden this week - I spent all day yesterday sobbing!!! I don't feel like I can talk to my parents as they are very emotional about the situation and i don't want to upset them and whenever I mention it to my husband he just says \"he will be fine\" but will he I wonder? I wish i was coping better for his sake because I just want him to be treated normally by everyone and enjoy being a normal baby. It would be good to hear from anyone going through the same thing or anyone who has been through this situation.
0 likes, 8 replies