We went for a follow up respiratory appointment at GOSH, His consultant said that his faster breathing is just his lungs, that if requried he could have a higher doese of inhalers or indeed have a further inhaler. He also spoke about having antiobiotics as a precaution but he doesnt feel like he needs them at the moment. He said he is not concerned (like RL mentioned) at all about his swallow, as he does not produce loads of saliva and is not having obvious problems swallowing his own secretions. He said if he was there is a medication he can prescirbe to thicken up the secretions, though this does in deed have its own problems. So all in all a good visit!
He also got his G-tube taken out and a mic-key button put in to his stomach, meaning he doesnt have a tube hanging out his stomach for him to pull on any more.
To be honest not sure if I like the Mic-key, it seems to leak a little and means I have to almost undress him in order to feed and give medications so will see, it also is not flush against the skin. To me it looks like a valve on a lilo!
Ethan gets the synagis injection every 4 weeks to protect him against RSV, which to you or me will be a cold, but to a baby like Ethan could mean another ventilator experience. It is the most common cause of bronchilitus. He gets the injection every 4 weeks between Oct and Feb but I feel that he needs it for longer so will ask the Dr what he thinks.
His Dr in Southend is very good so will have a chat to her to see what she thinks (Dr Khan).
Spoke to his dietician at Southend also - the Dieticians at Southend are wonderful, very supportive and lovely to talk to. Ethan is 14lbs or 1 stone!
I dont like the wards at Southend but love the play specialists, his consultant and dieticians.
I think this experience has taught there are bad parts to every hospital with out fail. It doesnt mean we should put up with it though!
Spoke to good friend Monique who I met at Southend, her little one Harry has severe allergies and he was neighbours with Ethan on the ward. Harry is one soon and is getting so big thanks to GOSH. Am looking forward to seeing h