This past week and next week we've got a lot of learning to do before Stephen comes home. Even though to us he often times seems like a healthy baby, the reality is is that Stephen is a special needs baby who requires a lot of extra TLC. Last week the teaching started with dialysis and we wrapped up this week with CPR. Next week we will continue learning dialysis until we've got it down and are comfortable enough administering it by ourselves at home. And somewhere in between we have learned lots of other things. Here is just a sampling of the things we have learned to prepare for Stephen's discharge and that we will have to do at home.
1. Administer dialysis; hook him up, unhook him, record the details of the nights dialysis, empty the drain bag and prepare the setup for the next night
2. Give him his meds via his g-tube. Luckily he only gets about 3 meds per day.
3. Clean his g-tube site each time we change his diaper
4. Check that the g-tube balloon is properly inflated each day so that it doesn't pop out
5. Prepare and mix his formula and breast milk feedings for each day for the bottle. He gets a special blend of fortifiers and protein added to the formula and milk.
6. Setup the feeding pump for continuous feeds overnight
7. Give him his epogen injection twice a week. epogen helps Stephen produce more red blood cells.
8. Check his blood pressure
9. Weigh him
10. Record every milliliter of fluid Stephen takes in and then calculate his night time feedings
Each of those steps are pretty easy, with the exception of the injection. I gave Stephen his injection yesterday and it was so brutal. First I had to actually work up the nerve to do it and then when he cried, it broke my heart. Evidently the epogen injections really sting. So hopefully they're going to switch up the concentration or something, so that it won't be so uncomfortable for my little man.
Other than that, the rest is just a piece of cake! :) HA!