Day 48: Frankie Farad Starts His Journey

Frankie Fatt began his regiment to be paroled. His oxygen flow has been turned down to 2 liters per minute while his mix is turned up to 40% plus. The plan with his air is to keep the oxygen saturation up but weening him off the flow. He can, and probably will go home on oxygen. The oxygen he will get at home can be up to 100% oxygen mix, but we cannot give him the flow. He is doing great. The order is to keep him at 2 liters, but give him as much mix as necessary. They will eventually ween him down to 1 liter per minute, which is "wall air", or the amount to come out of our home tank. Now he may surprise us and not need oxygen by the time he goes home, but we are not counting on that at all.

The second thing they have started is fortifying his milk. He has been losing weight while on the steroids and hopefully this will fatten him up. We give him a bottle up to 50cc every 3 hours. Whatever he doesn't take via bottle plus 25cc is sent down the hatch via feeding tube. He has taken every bit of every bottle today. They will steadily increase his feed via bottle until Frankie Fifth is at max feeds and we can get rid of that feeding tube.

I never got to talk to specialist or the normal doctor for that matter. The weekend nurse practitioner did talk to me, but isn't familiar enough with what has been going on to answered detailed questions.

The omphalocele looks great. I remeasured it today and it hasn't shrunk any. But I haven't been aggressive with it because he wasn't feeling good on the steroids. Which by the way he is feeling much better and acting better now. But considering he has grown and the omphalocele has stayed the same size, it has technically shrunk. The omphalocele did start to stink here lately. We haven't been putting silvadene on it since the liver was pushed up against it. Silvadene a is topical cream and they did not want it to start being absorbed by the liver because of some heavy ingredients in it. Silvadene must have stopped the bacteria growth, or whatever you would have under a wrapped moist area. Instead we are now applying a antibacterial like neosporin to it.

Frankie Flock is doing much better. His new room is bigger but poorly laid out. When I said this to my dad, he said "never happy". I replied "Sure I am. I'm very happy. I've got everything I ever wanted."