Yesterday the octagam went fast but with Jason not well again Dr. P wanted to keep him here for observation. I wasn't going to go anywhere anyway. When he examined Jason he said that his chest is still very crackily and his stomach is very bloated. He sent us for a chest and a stomach xray, did full bloods, blood culture and a stool test. The bloods showed that he was very dehydrated which I suspected. The chest xray showed that he still had a lot of fluid in his lungs from aspirating last week and the stomach xray showed that his stomach was very bloated with air pockets. He has had this many times before. This to me is all part of his whole stomach cramps and bloating problem. So we continued with nebbing, started physio again and he and Prof B agree with me that maybe we can try the medication for cyclic vomiting syndrome. Jason use to be on all 3 medications a few years back and I would say it did help. The reason why he was taken off them was when we went through the tube weaning he came right and the nausea, gagging and vomiting stopped. Dr. P therefore agrees that there's no harm in trying, they are all clutching at straws as they don't know with Jason and it's worth a try.
Yesterday he slept a lot, for a good few hours in the afternoon and he slept well last night. We have had him on continuous pump feeds of neocate at a slow rate as well as the new medication and so far so good. We had a peaceful night. His tummy definitely isn't right, he has been having cramping, peristalsis movements and quite a lot of poos. Not diarrhea but the antibiotic would do this anyway. We started physio yesterday as well.
This morning Jason was quite drowsy and talking funny and he has been sleeping the whole day from 2pm and still sleeping now at 9:30pm. I think the one medication is making him very drowsy so we have changed the timing of the medicine. Look he has slept a lot the past 3 days which is good for his body to rest and heal but goodness he is sleeping a lot today. So tomorrow we will give his dose at night which will be better. I don't understand as last time he was on this medicine he was fine. Look it is a tablet that is crushed so you don't get the exact dose. They are going to try get the syrup form but a few years back it was discontinued so I doubt it. Anyway we will get the doses right and see what works for Jason. We are in the right place and the doctors can keep an eye on things and see how things are going.
At least the gagging and vomiting has stopped. Frustrates me as I hate sitting here watching my little man suffering. I just want things to improve, I want to go home to my hubby and my baby girl. I miss them so much. I am worried about the future, I don't know where we are going. Are we going to be able to go back to normal bolus feeds or are we going to have to stay on the pump which I don't want Jason attached to a pump all day. I want him to go to school and play, I want him to be a "normal" child. Erin has finished up with us and we don't have anyone to look after Jason so it's either find someone else or school. I would love him to go back to school but at the moment he is so ill and I can't send him to school sick and gagging. Going to work is going to be almost impossible and I am going to lose out on my daily salary. I need to see the endocrinologist still and then we have all the kidney tests still to do. It's a lot to take in and a lot to do. I guess take it one day at a time but I tend to look far into the future. I have always been one to plan things ahead. Unfortunately this time all of this is out of my hands. It's in Gods hands - I just have to keep the faith and trust in him. God is our healer and he can do miraculous things and turn a really bad situation around.
Anyway it's time I got some rest too. Time to scoot my snoring little man over and get some shut eye. Tomorrow is another day and tomorrow could be a great day.