Yesterday morning I got a call from Prof B to say that he bumped into someone from infection control in the hospital and discussed Jason's case with him. They both feel that with Jason's problems of having combined primary immunodeficiency disease, malabsorption issues and kidney risks it would be better for Jason to have the 7 day course of antibiotic. To be honest I was expecting this. When Jason gets sick we are usually here for a week anyway. So a few more days away from home, Bruce and Nicole but it's in Jason's best interests for recovery and risks. So it's looking like we are here until Friday.
Jason's drip infiltrated yesterday, shame his left arm was all puffy and full of fluid but it has come down again. They had to re-drip him yesterday and tonight again this one started going red and would have infiltrated. Drips really don't last on his little veins. Poor child, not nice going through this prodding and poking for bloods and drips.
Physio is going really well. We are still doing physio twice a day as his chest has been really chesty. He is getting very good at coughing and bringing that phlegm up. Unfortunately we have to suction him to clear his nose as the mucous is very thick and difficult to clear. Today he was so good. Instead of holding him down and restraining him with a blanket we tried another option of seeing whether he would allow us to suction without holding him down. We needed to get some spit as the doctors want an immune test done on his spit. WELL Jason doesn't produce much saliva at all. We didn't get any with trying for ages. He allowed the physio to gently go into his mouth and sat there so good. I guess the lack of saliva also has something to do with the no tears. He never drooled as a baby! Anyway he allowed the physio to suction his nose without being held down and she showed him how to use the suction machine which he found that quite interesting. His nose is so much better this afternoon and his chest as well.
The sputum result came back which isn't clear yet. There is still evidence of bacteria. We repeated the urine test this morning and those results aren't in yet. It turns out that Jason did in fact have 3 vaccines for infanrix hexa which is meant to protect him from this Haemophilius influenza. We are guessing again with his immune system and malabsorption these wouldn't have protected him. Quite scary!
The urinating has improved a bit. Yesterday he was still weeing like crazy but today a lot better. We have gone through a pack of 50 nappies in 4 days with the amount of weeing and pooing he has been doing. Today we did quite a few toilet trips. I am trying to get him use to the toilet. Unfortunately he doesn't have too much control over his bladder and bowel action but we are trying.
We had a nice visit today from Sam who owns Jason's school. All the kiddies have made him the most precious card, each drawn their own pictures and they dropped off a lovely pressie for Jason and some nice Woolies food for myself, Bruce and Nicole. It was such a lovely surprise and perfect gifts. The food here has been very difficult to eat and poor Bruce has been trying to work all day, fetch Nicole after work, bath her, cook and feed her. He is so tired as well so this was really lovely. He said Nicole lapped up half of the cottage pie tonight and he ate the other half :-). Thank you to everyone from the school that arranged this! The school photos also arrived today and I can't help looking at them. My little man is just so handsome. The photographer put him in the most cutest outfit that she provided for the photos and wow he looks too cute!!
If you are still reading these updates, please leave a comment or like the page so I know I am not writing to myself!!
Anyway time to curl up next to my little man and get some shut eye before the next nebs. Night night all and please keep Jason in your prayers xxx