(sunday)
Kai had a decent day yesterday. He spent the afternoon with his Gigi and he was feeling pretty good. He had a long stretch from 2pm-3am with no pain meds. He tolerated his tube feed all day and all night and everyone was hopeful that we were heading in the right direction.
The on call Dr. came in this morning and was happy to hear of his good day. We set the plan for the day and she talked about transitioning this plan to a plan that will work at home.
She even said the word discharged!

The plan: keep increasing his feed rate, from 25 to 45. Decrease his IV fluids as the feeds increase. Sort out all his meds. Feed purée by mouth three times a day. These are the goals to meet in order to talk about going home.
And we were well on our way. Earlier this morning, a few hours before we saw the doctor, I had already given Kai about 4 ounces of purée and he ate it up!

Unfortunately Kai did become irritable again and within 5 minutes of the doc leaving, with our new plan in hand, Kai vomited up ALL of the purée he had eaten 3 hours before.
He was very upset, screaming and crying like I had never seen. We clean him up but he was still a mess. He ended up getting another dose of Ativan to calm him down and help with the nausea. It worked, but this whole little episode set us back at least another day.
Tomorrow is Monday to we should be getting back to work with the full team back from the weekend.
Let’s hope they have some answers and some kind of plan…