Last night he slept well as he had vallegan. Today we decided not to give him any vallegan to see how the sandomigran helps with the nausea. He has been nauseous all day even with the zofran, sandomigran and buscopan. When he is awake he gags when he sleeps he is ok so he just sleeps. He knows that when he closes his eyes he feels better so he has basically slept the whole day on and off.
His colouring in his face and body is looking much better, he isn't looking grey anymore. He is getting red blotches all over that come and go and the red ears but that is a normal side effect when he is ill like this.
His tummy still isn't great. We have gone through a whole pack of nappies since Monday which is 10 to 11 nappies a day. His poor bottom is red and raw and bleeding as usual. We have the creams, the vaseline, the powders, the anti acids but none of that is going to help at the rate we are having to change him. He is on his usual imodium.
I must say we have at least seen some life in him today. When he gets visitors he does try and put on a brave face. He had a visit yesterday from his old teacher and his OT- they got a thumbs up from him and this morning the owner of his school and OT came to visit and brought a beautiful card coloured in by his friends with three little presents. He was very chuffed and those were the first words we heard today "where's my present".
His feeds have been going at 50mls an hour today so he has had a little nutrition today. Nothing what he should get and needs but I'm happy that at least it's something. I'm grateful that even through the gagging he has allowed me to keep his feeds going. He did want me to stop it for a bit today so I gave his tummy a rest. It is during times like these that I am grateful for the feeding tube although the feeding tube is also many reasons why he gets sick as well. A bit of a 50/50 situation but it has saved his life many times.
Nicole and Bruce are coping well. Bruce is this AMAZING dad that just jumps in and handles a difficult situation like this so well. We are really blessed to have such an amazing dad and husband. In the morning when I pop home to see them and to have a shower, he has already sorted them both out, showered, dressed, breakfast made, tea and eating at the table. How amazing is that. He pops out to visit Jason and myself and leaves early at 4pm to go and fetch Nicole from holiday club, baths her, feeds her and gets her to bed before he himself can breathe. Not too many dads would cope and he has been absolutely amazing. Nicole, I am sure she misses Jason and myself but she is coping very well. I get questions when I arrive like "mom where's Jason" I say "hospital because he's sick" and she's like "ok shame" and carries on with her thing. When I leave in the morning she gives me a huge hug and lots of kisses and says "see you tomorrow mom". She really is an independent little girl (only 4 and had to grow up really quick). Bruce and her are SO close and as long as daddy is around she is happy.
So my brother's 40th on the weekend has been postponed for other unforseen sad circumstances and we will not be missing that this weekend. We were all looking forward to that but it really wasn't meant to be this weekend. We will have another weekend sometime to celebrate.
Otherwise we have done polygam today as well. Polygam is Jason's medication for his immunodeficiency. Lots of people ask what it is. Polygam is blood plasma extracted from blood from many blood donors and this is given to him intravenously and builds up his immune system. Hopefully this too will help with the healing process of this yukky illness.
Please keep Jason in your prayers. We really hope that he gets better and we can go home on the weekend.