As usual the bloods show everything is fine besides him being dehydrated. His CRP levels are fine which is an indicator that he doesn’t have a bacterial infection therefore doesn’t need an antibiotic. The blood culture will take a few days and we are waiting on the urine tests as well. Dr. P and I both agree and feel that this is Jason’s usual cyclic vomiting syndrome. Cyclic vomiting syndrome is a nasty disease. One minute you are absolutely fine and the next minute SO SO sick where you need an admission for fluids because you can’t stop vomiting and dehydrate. In Jason’s case we also have to watch his kidneys as he has chronic kidney disease as well. We shall see what the urine tests show.
We have added some motilium today to his medication regimen which is also a medication for nausea. Tonight we have given him a small dose of vallergan which will just calm him down and help him sleep so he doesn’t constantly wake up and gag. Shame to have this non-stop retching and nausea for 3 days is terrible. His stomach must be so sore. Jason doesn’t complain though, he doesn’t talk much and I guess he is also so use to being in pain and so use to hospitals. He understands that he isn’t well and he understands that Dr. P and myself are doing all we can to help him and make him comfortable. Tonight when I said our bedtime prayers and was holding his hand and praying for him, he was squeezing my hand and when I said “amen” he just nodded his head at me as if to say everything is going to be alright. It breaks my heart watching him so sick and there is nothing I can do about it. I can’t even hold him and cuddle him as if I touch him he starts retching.
Bruce and I were whatsapping tonight and we were saying how we are so use to this and so use to being apart like this. Us in hospital and he and Nicole at home. It has become a part of our life. We’ve had a good run the last three months but that doesn’t make a set back any easier. It’s actually harder. We just see such huge progress with Jason with his eating and just see his cheeks and legs starting to full out and then we are hit with this again. His last oral feed was on Saturday. He had nothing Sunday and Monday and today we started feeds via the pump at 10mls an hour. Two teaspoons an hour. But we have to take things slowly. No good trying to push feeds and he starts vomiting again. I have gotten better at accepting that when he is sick like this you simply cannot feed him and just have to keep him hydrated and comfortable.
Of course I am missing work again which means another bad month financially for us and Jason is missing school and therapies. Again this is something we have to accept as it is out of our control. Luckily my work is so understanding and with me being paid per hour I don’t feel guilty that I owe them. It works both ways for us and I am extremely blessed to have a job given our circumstances and the time off work I have to take. School and therapy, Jason will just have to work hard at catching up.
Well it is getting late and I must catch some shut eye myself. Time to hit my chair and catch some sleep. Thanks to everyone for their messages and prayers we really appreciate it xxx