This morning I was up bright and early before Jason for a change. I left him sleeping and raced home to see Bruce and Nicole and to have a decent shower, fetch some clothes and a few things we needed. I have had a task that I have really needed to do - Jason's medical file to go through, photocopy and scan his entire file. We need to go through his entire history (6 and a half years) and put together the pieces of the puzzle and form a case history with relevant documents. I must say I felt quite emotional going through every piece of paper in my file. The amount of radiology he has had, the amount of blood tests, stool tests, urine tests. The number of doctors we have been to, neurologist, cardiologist, urologist, ophthalmologist, nephrologist, endocrinologist, ENT, psychologists, speech therapists, occupational therapists, audiologists, . Shew it's a lot for such a small little boy. It brought back a LOT of memories. Made me realize how far we have come but also how we still don't have the answers that we so need. Maybe we will never get the correct diagnosis but I will never give up trying. The doctors are all also compiling their reports for me giving a case history of Jason and their findings. The blood labs are getting their results together - years of bloods to sift through and reports to compile.
Jason's chest and nose is getting better every day. It isn't clear yet which is concerning as it has taken weeks to clear. We have been doing a week of IV antibiotics and a week of physio with suctioning twice a day so it is pretty concerning that this infection is so persistent and difficult to get rid of. Dr. P did tell me tonight that his levels are starting to normalize which is great news. The physio has mastered the technique of suctioning Jason's nostrils without holding him down. He is amazingly enough happy to sit there and play on his ipad while she suctions - this is their first child that will allow this. Shame he doesn't complain about much just sits there and lets her do her thing. He is looking great though and feeling great. Starting to get adventurous dancing and singing and talking which is music to my ears and so good to see.
The two doctors ordered some special stool tests to be done today to check out his malabsorption issues. They are testing for faecal trypsin which is one thing and I am not sure of the other two. Not your usual stool tests, the lab even had to research and google on what needed to be done. I had the joy of being the poop scooper today. Again Jason was so good following instructions pooing in the potty and weeing in the toilet. We haven't been able to potty train him because of his chronic diarrhea from malabsorbing and I don't think he gets a warning before it is due. So his poo went on ice to two different parts of the country today. Tomorrow, Saturday and Sunday I have to collect again over 72 hours for a 72 hour stool test. These tests are all to figure out if and why he is malabsorbing and how we can help to sort it out. I hope they actually find something!!
Otherwise if all goes well we will be discharged tomorrow. I saw both Dr. P and Prof B today and they both seem happy with him and happy that he can go home after the final dose of antibiotic. Prof B said that we must repeat the urine test when we come in two weeks time for the next octagam. I can't wait to get home to my family, my home and to get some fresh air. There is no air in this place, being stuck indoors for 8 whole days is hard. Hopefully the sun will come out so that we can take Jason and Nicole to the beach a bit over the weekend. I am not sure how next week is going to plan out but I need to get back to work as soon as possible. The thought of working right now gives me an instant headache but I really have to get to work to earn some money and besides I have a tax deadline at the end of November. Everything will work itself out but I need to make sure Jason is ok. His immune system is down at the moment and I need to protect him - not such an easy task when kiddies with perfectly good immune systems are getting so sick at the moment.
Anyway I better get some sleep I am exhausted. My little man is fast asleep and looks so peaceful. Time to cuddle. Night night xxx