I had a difficult time today accepting this second admission more out of total frustration that we are here again and that the blood tests showed nothing. I am finding it hard to accept that despite Jason being very ill the piece of paper says nothing much at all.
We are still waiting on the results from the blood culture, the throat swab, the peg swab and the urine tests. These things take time and I am finding it extremely frustrating that Jason is suffering with this abdominal pain, nausea and gagging. He has slept practically the whole day. He hasn't had any vallegan today this is pure sleep out of pure pain. He knows when he sleeps he feels better. While he is sleeping he is getting 100mls pediasure every hour. His dietitian came to see me and his growth chart isn't looking good. He has lost so much weight and we have to try and keep him on continious feeds while he is here to get in enough calories. He needs 2000mls of pediasure a day for his height and age. Not an easy task. An example is Jason can handle a 200ml pediasure feed. Try and give him 10 feeds in one day - not an easy tast at all - practically impossible actually and that's him on a healthy day!! Man feeds, feeding, eating so frustrating and difficult. Try and feed your child every 3 hours and still encourage them to eat when they don't like eating - not so easy.
We did a chest xray and an abdominal xray which didn't pick up anything but at least we know nothing is visually there.
Jason's nephrologist came to visit and give his opinion tonight. The paed and him obviously had a chat before he came in because his first words to me was "we are clutching at straws" so basically they don't know and are trying to figure this out. I hit a wobbly and was quite stern with Jason's paed today out of total frustration. I basically told him that it is impossible that Jason can be so sick and have nothing and we need to find that something. It is a good thing because they will be thinking harder tonight about Jason's case. I know Jason is such a complicated case but complicated or not they have to help find the source of the cause.
Thanks to everyone for their love, support and prayers. A good friend of mine has been popping in every day just to see me and Jason, dropping a chocolate, staying for a chat, popping in with a bowl of dinner for me. It means so much. Thank you my friend - you have been so kind to me xxx. Another friend popped in this morning to pray for Jason and us. Bruce was here at the time and it was so special that she was able to pray for Jason with us - thank you my friend. To my other special friends that have been phoning, leaving special whatsapp voice messages (you know who you are), my facebook messages, wall posts and whatsapp messages, thank you so much it really means a lot to me. Lots of people have been asking if we need anything - thank you so much.
Lots of people have asked if I need anything. It's hard to ask for a specific thing because you feel spare suggesting in the first place. Well I have come up with something. I use to be a great reader before life got so busy but now that we are in hospital so often I want to start reading again. We are in hospital for polygam every three weeks and now with these infections a few days at a time. If anyone has any good reads that they could lend me or recommend. Please let me know. I will start a list of books and it's always nice to have recommended ones. I normally like true stories but if you have read something really great let me know :-). Nothing like a good read to pass the time.