When I saw Dr. P he wanted to know what I wanted to do. He was happy with Jason looking good and it was up to me. I decided that I would rather wait the day and see how he was after his 5pm iv antbiotic and if he was ok we would go home. So we decided to see Jason's dietitian while we were here to see where he is on the growth charts, how he is doing nutrition wise and if there is any more that we can do. His weight is pretty much the same but the good thing is he isn't losing even with the little amount he is getting. He is meant to be getting 1600mls of neocate but we are not anywhere near that at the moment. When he was well no problem we were managing 800mls during the day and 800mls overnight fine but that's with 200ml feeds during the day every three hours. We haven't been able to do this for about 2 months now. So it's good that his weight is maintaining and I am really pleased about that. The problem though is it is showing in his bloods and urine tests. It is showing basically that he is malnourished and his ketone levels are high which isn't good. Obviously we are trying to do the best we can to get volumes in but with him gagging and vomiting like he has been, it's been impossible. No-one wants to eat or drink when you are feeling constantly sick with vomiting and diarrhea. This is Jason all the time. So anyway we discussed all our options and there aren't many. The neocate would be providing his nutrition if we can get the 1600mls in as it is concentrated. What we are going to try is another formula that has higher calories and with that formula at night and the neocate during the day he would meet the calories that he needs. BUT the question is whether he will tolerate it. We shall see.
This afternoon he was complaining of a sore tummy a lot and his stomach was really noisy and lost of peristalsis movements. We gave him some buscopan eventually and it finally settled. We aren't sure what's causing this.
All the test results are now in, his full bloods were fine apart from showing the dehydration and malnourishment. The stool test showed no parasites. We are waiting on rotavirus and adenovirus but I really don't think so as he doesn't have too much diarrhea. So on paper he seems fine. He is looking a lot better today but still not 100%. We will see how tonight goes and how he is tomorrow.
We have a wedding to go to tomorrow. A good friend of Bruce is getting married but we have already acknowledged that Bruce will go alone and my folks will look after Nicole. If we miraculously got discharged that would be a bonus but I don't want to rush out of here and have to return again. It would be wonderful to have a date with my husband kid free for a change but I cannot leave Jason alone in the hospital. I have had offers from people to come and look after him which is really kind but the wedding is too far and it would require sleeping away. Jason doesn't like not having myself or Bruce around. Last time we tried at the Barnyard Fund-raiser he was screaming the hospital ward down shouting "mommy, mommy, mommy". Shame no Jason is more important and besides he is attached to a drip and a feeding pump that no-one is familiar with.
So praying for that miracle healing still. Come on everyone keep praying with Bruce and myself!!! A healing is possible and I believe one day Jason will be healed!!