We are in for polygam today which is Jason's 3 weekly infusion. As I have said before, polygam takes double the time as octagam and it has been a LONG day. We arrived here at 8am and it is 9:35pm. We have about 50mls to go so still so about 45 mins. We battled with his drip this morning. The nurses battled to find a decent vein that wouldn't pop. Every time they started the drip the fluid came out the vein and into his tissue so they had to poke him again. Eventually they had to call the paed after the one infiltrated after running for an hour. Jason's veins have been used so much that it really is difficult to find a decent vein. They had to poke him about 6 times. With his immune system we can't go for a port as that is too risky from an infection point of view. We eventually got it right. Jason is starting to fall asleep eventually - poor sausage. His strength and courage amazes me. He is one very special little boy. Otherwise his bloods look good. We always have to watch the hydration which is always due to the chronic diarrhea. Unfortunately even with the eating of solid meals this hasn't improved yet. Actually today I had a meeting with his dietitian and she has come up with a suggestion that Jason's paed will run past a gastroenterologist overseas. We are also going to do a daily dose of immodium to try and help. He is already on a good strong probiotic with digestive enzimes but it isn't helping yet. It's hard because as much as he is eating and being fed, the food isn't being absorbed. He has malabsorption issues. This is something we have battled with for his whole life. BUT as some have said from the pictures below, he is looking like he is filling out.
Well not long to go and we will be heading home. A very long day and a Monday to top it off. Tomorrow is going to be a long day at work. Always a happy moment for me when I drive out of this parking lot is knowing that we are done for 3 weeks and I always drive away from our "second home" and thank God for yet another successful infusion and the opportunity that Jason has to have this treatment. We are very blessed.