Just when we think we have this wean nearing an end we are hit with some sort of illness or bug. We were down to 200mls via tube only over 24 hours but Jason hasn't been well and we have had to up his night feeds to make up for the loss of fluids and weight.
Yesterday he had 1165mls orally (865mls paediasure and 300mls water) and today we are on 740mls orally (260mls paediasure and 480mls water).
The last few days he has had a runny tummy and gagging. Honestly I am hoping that it is just a tummy bug. For those of you that know Jason he has a history with gagging, vomiting, chronic diarrhoea, grinding his teeth and excess sweating. We haven't had this the whole wean (all medication was stopped) and we thought this was it, it was tube related!! So seriously I really hope that it is a bug or illness that can be fixed. Today I fetched him after only being at school an hour and a half. He wouldn't drink his milk this morning and wasn't well. At school also not well sweating, lying down on the floor, coughing and gagging. Today we have only managed to give him little bits of milk at a time but mainly water to keep him hydrated (it's ridiculously hot here - been over 30 degrees today). We have had lots of poos, gagging and vomiting bile.
Well tomorrow is polygam and we will be in hospital for the day. The paed will do a thorough examination, full blood count and a blood culture like he always does and that will tell us if there is something. I did speak to him yesterday because I was concerned and he is aware that Jason is not well.
I have also spoken to Jason's dietitian who will come and see us and let us know how much fluid he needs during the day and how many calories he needs to keep his weight up.
Man I am disappointed I really wanted to get rid of tube feeds and we were 4 days away from that. Last night I didn't sleep well getting up checking on Jason throughout the night. I have to because sometimes the extension tube gets tangled or wrapped around him. As it happened between one of my checks Jason had gotten tangled with the tube wrapped around his stomach and as he turned the whole drip stand fell down and almost fell on him. Thank goodness it missed him but it was lying on the bed next to him, just missed him!! I just heard a huge crash and went running.
Us parents of tube fed children don't get sleep. I haven't slept through in 4 years 8 months and a lot of you are in the same boat. We have to get up and feed them during the night because they can't handle volume during the day. Otherwise they are on the pump and we have to check on them to make sure they aren't being strangled by the tubes or have to make sure their feeding tube hasn't come out their tummy and the hole has closed. A lot of us deal with gagging, vomiting, tube infections and constant illnesses. These tubes save their lives yes but it's not so easy getting them off the tube when that is all they have known. These kids have terrible oral aversion and you can't go near their mouths with a spoon, food, a tooth brush or a bottle or cup.
Funny Jason's dietitian who has just had a baby said to me yesterday "Jill you know you tend to forget how hard it is having to feed and get up every 3 hours for these new born babies" She said this to me knowing that I am pregnant and due next month. My answer to that was "No Claire, I haven't forgotten, I am still doing it with Jason".