Having Jadon home is a blessing, but has also proved to be a lot of stress and work!
Jadon gets fed every four hours (but at least we get to skip the 1:00 am feed)! He is currently on a formula that we have to mix so that adds to the set-up time. The pump needs to be primed, dose and rate set, and it runs for just over an hour. After that we need to flush out the G-tube and clean the feed bag/line.
Jadon gets meds 6 different times a day, for a total of 26 doses. These all have to be drawn up with various amounts and individually injected into the g-tube or feed-bag.
One thing that is unexpected is that Jadon has needed to be on constant O2 since coming home. The plan was to use it on and off as needed, but whether it be the increased activity of interacting with his siblings, or the new environment, or something else, he needs it.
The other stressful thing is the suctioning. Every few hours, we can see Jadon struggle to breathe a little, and hear a bit of gurgling at the back of his throat. We ask Jadon if he needs suctioning and he will nod his head yes. If we don't ask him quickly enough, he will get our attention and ask us to suction him!
Finally, every day we get a community nurse come in to run Jadon's IV antifungal med through his picc line. She is teaching Sara to hep-lock it so that the nurse will be able to stop by to start the med and then Sara will deal with the end. Within a few more days, she will train Sara to do it all from start to finish so the nurse won't need to come daily.
This all boils down to a pretty full-time job. Because of the feed and med schedule it is difficult to get a long uninterrupted stretch of sleep. The kids and grandmaman have been great in playing with and entertaining Jadon - who is absolutely thrilled to be at home. We are starting to train some of them on some of the medical procedures so that hopefully we can get a bit of a break here or there!