KU feeding study

I just wrote this entire post and somehow deleted it.  So here goes again.

Jaxon is in a feeding study to wean him of his feeding tube.  Here is a article giving some of the information.  I will try to do a weekly/bi-weekly post on all the happenings.

Week 1 we just met with the study team and got all his baseline vitals, signed paperwork, drew blood.  We had homework to get 3 days of food log, and 2 video's.  He had several seizures on Saturday so his feeding logs were a little weak.

Week 2.  More vitals and blood work and received his study medications.  This week we had to move to 12 hour continuous feeds with his pump.  Meaning he will get pedisure for 12 straight hours at a slow rate.  Jaxon has never been on continuous feeds so I wasn't real sure how this was gonna work out.  At first I assumed this would be an all day thing.  I just thought about how long these 10 weeks would be with him taking his pump to school and his balance issues while carrying the weight.  However, they gave us the option to run it over night and boy were we relieved.

Night 1 was a disaster his tube came unhooked and pumped milk all over his bed for an unknown amount of time.  If you've ever smelled pedisure formula you understand.

Night 2 was a success.  He got all his food and when he woke up he now tells us "I'm Stuck"  meaning his tube is still hooked up and he can't get up until we unhook it.  This is a great thing just trust me on the details if he gets up and pulls it the tube out while knocking his iv pole with pump and everything over.  Yeah it's happened.  He even ate breakfast.  I can't even remember the last time he actually ate breakfast.  So maybe this 12 hour thing will be a bonus.

The study lasts 6 months and at the end the goal is to be tube free.  I would love for him to be tube free but I will not be disappointed if he's not completely tube free. I only be disappointed if he is not eating more by the end.