I have two wonderful DSs. My second DS is almost three and was born with a rare health condition (TOF/OA). We have been through it.
His condition was not diagnosed until birth so he was rushed to a specialist hospital where he was ventilated and critically ill. I couldn’t follow immediately as I was recovering from a c-section. Then he had major surgery on his respiratory system and oesophagus and spent over a month in NICU. I was three hours from home and away from my support network and older DS.
Since bringing him home, he has needed four more operations. They are routine and to be expected with his condition but still gut wrenching.
His condition carries the risk of choking due to oesophageal scarring / dysmotility and I’ve had to call an ambulance several times. He gags/wheezes several times a week and has choked properly in the past. At times every meal time has been a source of anxiety.
His condition also makes him prone to respiratory infections so each winter has been a seemingly never ending stream of coughs and colds, some of which have needed hospital treatment. This was getting much better but is now more of a worry again due to Covid.
Despite all this he is thriving and anyone who didn’t know him would be shocked to discover there is anything wrong with him at all. He’s a typical bright two year old who is into everything and overcomes every hurdle.
But I’m just so tired. This evening he gagged on his dinner so he is in bed next to me whilst I keep an eye on his breathing. It feels never ending sometimes. It can feel lonely too - does anyone else have experience of something similar?