I'm finding it hard to keep up to date with Brett's diary - not enough free hours in the day!!  Well, the last 2 weeks or so have been very busy, Brett has been seen by the Paedetrician and has now been started on Domperidone for the reflux problem.  He is not vomitting quite so often so it seems to be helping along with the Gaviscon.  He is still being fed entirely by NG Tube which is hard work because in between each feed the syringe and the giving set have to be steralized ready for the next time, and as each feed takes about an hour by the time you have tested the aspirate and then slowly given the milk and flush and done mouthcare, it seems as if there isn't much time between feeds.  Also because of his reflux we have to keep a close eye on him after the feed in case he vomits.

Tomorrow I am going to try and speak to the Speech and Language therapist again and see if they will test his swallow again.  I am going to suggest that perhaps they can try testing his swallow with thickened milk this time (which they haven't done yet) and maybe try giving it to him from a spoon.  I just feel that he needs to be given a chance to have a go at feeding orally again and I don't want him to completely forget the swallow action.  We are letting him suck on a soother with every feed so that he doesn't forget how to suck and this will also excersise his mouth muscles.

Brett was seen by the Cardiologist at the Children's Hospital today.  He had an ECG, and Echocardiogram, and a Chest Xray.  He has evidence of Pulmonary Hypertension, a moderate ASD and a small VSD.  The plan now is to have a respiratory review to optimize his lung management, and an ENT review to optimize the condition of his upper airways.  He also needs aggressive treatment of the reflux, in order to minimise the risk of him aspirating on his feed.  He will see the Cardiologist again in 4 to 6 weeks.  We're trying to stay positive but it's hard when you don't know what will happen, we are just hoping and praying that everything will be ok and that his heart problems will heal.

Because of the problems with Brett's feeding we managed to get a sort of urgent appointment at the hospital today.  He has been seen by a doctor, the speech and language therapist, a dietician, and the nutricional nurse - all in one day!  When the Speech and Language therapist tested his swallow it was decided it was an unsafe swallow and was putting Brett at very high risk of aspiration, so he now has to be nil by mouth and feed entirely by the ng tube until it is decided he has a better swallow.  He also has reflux and this is making him vomit his feed back, so he has now been started on Gaviscon Infant with every feed.

The health visitor came today and we discussed Brett's feeding.  He is taking over an hour to feed and it is mainly by tube because he seems to be coughing and gagging when I try him with the bottle.  When he does swallow it is with a gulp or a retch.  The feed is mainly given by tube now and has to be given very slowly or he will vomit it back.  He also becomes very restless after only small amounts of feed.

Home at last!!!         At long last this is the day we have all been waiting for.  Brett has been discharged from hospital and is home with us at last.  Its scary to know that there is no nurses or docters on hand and that we have to care for him and feed him through the tube by ourselves. Luckily we have been given plenty of advice, support and telephone numbers for if we need any help. Sam and me have decided to stay up all night and watch Brett, as we are to scared to go to sleep, it will be Brett's first night without any monitors attached to him.