Sorry for the lack in updates, just been really hectic with Jason not feeling well. On Wednesday we were in hospital for the day for his 3 weekly day visit for polygam. Always a VERY long day resulting in us being stuck to a drip and confined to a bed for 10 hours. Thank goodness Jason is use to this and loves dvds so happily watches or should I say hops between dvd's and scenes of the dvd's (as long as it makes him happy I am happy).
The full blood count didn't show any sign of infection, which the paed said rules out a viral infection but that doesn't mean he doesn't have a bacterial infection. The bloods for the first time in months showed that he is actually hydrated and not dehydrated which is fantastic to hear!! Unfortunately the blood lab dropped the vial of blood for the blood culture so they couldn't test for salmonella - the paed didn't want to prick him again unnecessary. They also did a urine test which I don't know the results of but sure if there was something there we would know about it by now. Jason was not a happy camper when we tried to put that urine bag on. He knew what was coming before we even took his nappy off - screaming at the top of his lungs and kicking. When we did finally get it on he kept pointing down to his crutch area saying "no, no, no". Shame!! At least we are done with polygam for another 3 weeks and this will hopefully help fight the infection that he has. The paed has put him on an antibiotic to clear whatever he has.
The past three days he hasn't been well and taking paediasure orally has been a big problem. On Wednesday he only took 200mls, Thursday improved to 830mls and today 100mls. Thank goodness he will take water without a problem so I have accepted the fact that he is sick and not pushed the paediasure during the day and rather waited for the night to give him via the pump. Of couse when our kids feel sick they are not going to want to eat or drink so I have taken it really slow with the milk and I am sure once he is feeling better his drinking will improve - thank goodness we have the feeding tube for night feeds! We didn't make school and work on Thursday because he was gagging too much and really not well but we managed to get there today. When I got home from work he was sleeping and Bruce said that he wasn't well and had been vomiting. I stupidly gave him some milk while he was asleep and ten minutes later he was awake and vomiting really badly. Just kept vomiting and vomiting until eventually he fell fast asleep and had a nice rest. I gave him some Zofran for the nausea and when he woke up he was feeling much better and much happier.
So it's been a few tough days for Jason but hopefully he will be feeling much better soon when the antibiotic kicks in. With Jason it usually takes 3 to 4 days until he starts feeling better. Otherwise there is nothing we can do but love him and wait for this to pass and not push him with the oral feeds. At least his weight is still doing great but I expect it to drop tomorrow with all the vomiting and lack of calories.
Speaking of calories I have received a report from J's dietician and the good news is we are meeting all his nutritional requirements (Energy, protein and fluid) with the 1500kcal per day. So this was fantastic news for us. His fluid intake is perfect if we can get to 1500mls paediasure. We got to a stage where he was managing 1300mls so I am sure we will get there again but for now we do what we can and what we can't we will make up for during the night.
I am confident that Jason will get better and go back to drinking well again so I am not worried about that. This is just a minor set back and as Dori in Finding Nemo says "just keep swimming", "just keep swimming" we will "keep swimming" and continue with the wean when he is better.