Since Noah's last stay in hospital we have been busy trying to work out the best regime with his feeding pump. At first (with advice from the dietician) we thought we would just run it overnight so that he gets all of his feeds during the night, and then just a couple of boluses of water in the day, plus water that he gets with his meds.
After a few days we realised that there was no way that was going to work, as he wasn't getting enough water. The dietician actually argued with me over how much water he should be getting, and asked our paediatrician at the hospital if he thought we were giving Noah too much water. He looked at me and asked me what I thought and I reminded him that without as much water as we give him, his bowels get even more blocked up than they already are. He then looked at the dieitician and said 'it's working for the family, so we stick with what Mum knows works best' :) I was just about ready to explode at a dieitician or two, a couple of times we were in hospital. They just seem to have NO clue about what it's like to care for a child like Noah. They often seem to go on their charts based on 'normal' kids, who don't have bowel issues and who are moving, running, walking and able to burn more calories than Noah.
After a week or so we realised that it was best to keep the pump running continuously - for around 22 hours a day - giving him a couple of hours break in the early evening (which is nice as it means it's easier to have a cuddle with him without the pump attached :).
We now give him all of his water at night time via the pump. The dietician wouldn't be happy as she would say he is getting way too much, but if Noah is happy then we are all happy. It makes it so much easier as it means we don't have to give him boluses of water during the day, and there is also less risk of him aspirating from having a bolus.
It took me a while to get used to the noise of having the pump running all night as Noah's bed is in our bedroom and about a metre away from my head . It's an awesome pump as it's so small and portable, but it doesn't run continuously but stops and starts every 60 seconds or so. It's only a soft whirring noise, but when it's stopping and starting every 60 seconds it's hard to get into a deep sleep, before hearing it start up again. I worked out that instead of having it on the IV pole, it was much quieter stuffing it under Noah's pillow as it muffled the sound. Now I get a much better sleep.
We now give him his feed continuously for 10 hours or so during the day. I LOVE that we can take the pump out with us and have it sitting on his wheelchair. The hardest (but best!) thing has been getting used to not feeding him every few hours in the day. Before the pump we were giving him a bolus of either water or his feed every one and a half hours, so we were constantly watching the clock, as we would know it was time to give him something.
The other day we were out for most of the day and we were saying how nice it was to know that Noah was being fed the whole time through the pump, and how we didn't have to stop and give him a feed. I wish we had it years ago.
Since coming out of hospital Noah has been back to his normal self. Everyone keeps asking me 'how's Noah now?' and I usually say 'he's good...or he's back to 'normal Noah'. That isn't great, but isn't terrible either...it's just Noah. At this time of the year it means lots of extra secretions because he has bad hayfever. It means we are having to do lots of extra nebs and suctioning, but it's actually hard to believe that he was so sick a month or so ago, but is now back to normal. I will take extra secretions and suctioning over how he was a month ago any day.