Feeding wise the plan is to do 3 x 200ml bolus feeds during the day and at night 80mls per hour for 12 hours. Jason isn't good at handling bolus feeds (bolus is when you feed directly into the feeding tube but without the pump). He doesn't handle volume well. So I have had to give him 50mls a break then another 50mls and a break. He did handle two 100mls but I don't want to push him. He needs to get 1500kj per day so that is 1500mls per day of Neocate. This formula is definitely agreeing with him. It's lovely not changing a poo nappy every 5 minutes. I am not use to it and sure Jason feels SO much better as well.
I spoke to Dr. P tonight. He is happy with things. He has ordered the polygam so we will start that as soon as it arrives. We continue with the feeding program and see how he goes. He also spoke to the Professor and the Professor says we mustn't rush out of hospital until Jason is doing well tolerating bolus feeds and we can manage on our own. He doesn't want his gut to go back to where it was. Also we need to repeat the urine test for protein in the urine. That is a bit of a worry as if there is too much protein it means that protein is leaking from the kidney and we need to sort that out. Dr. P mentioned medication that would help. But lets not jump the gun, lets see what the test says and take it from there.
I also saw the urologist today. He would like to see Jason in 2 weeks time in his rooms to check things and decide whether we need to go ahead with the operation. He needs to have a look as he wasn't the urologist that did last weeks procedure. Also Jason needs a bit of a break.
Otherwise Jason's chest is sounding MUCH better. We are down to nebbing 6 hourly and physio only once a day. The antibiotics continue for the infections and protein in the urine.
Thank you to everyone that is contributing to help us fund Jason's Neocate. We really are so grateful as this formula is making the world of difference and we don't want to have to go back and ruin all the good this formula has done.
So I don't think we have TOO many days left here but we will see how the feeding goes. Tonight the night managers came to visit us - 4 of them. When they saw my blow up bed they asked what it was. I told them "that's my blow up bed". They asked the nurses "where's Mrs Long's bed". So HOORAY after 22 days of sleeping on the floor I have a nice soft bed tonight :-). Very excited to sleep in a bed yeah.
Speaking of bed, it's time I go to bed. I have a busy day ahead of me tomorrow :-).
Night night and thanks for all the prayers for Jason, myself, Nicole and Bruce xxx.