Late Thursday afternoon, Gabriel was finally discharged from Renown and he and Chet headed home. It’s been bitter sweet. A lot of the same feelings of anxiety, fear, paranoia and uncertainty fill your very being – like when we were first discharged from Oakland Children’s after Gabriel was first diagnosed.
Unlike all the other times Gabriel’s left the hospital, this time he’s not his normal bubbly self. He’s still sick and miserable. And it’s heart wrenching.
Every day is a struggle to get him to drink fluids and an even bigger struggle to get him to consume any calories. For the past week he’s eaten hardly anything, which doesn’t help him feel any better and certainly doesn’t make it any easier to keep food down.
It was encouraging Thursday night because Gabriel asked for food – celery. And, well, guess what – we’re out of celery. So then he asked for olives, which we had and after a couple olives, they just didn’t taste good. That was the extent of food for him last night.
Finally, out of probably what is approaching shear desperation, Chet broke out one of his Cherry Bomb Crank eGels. Well, Gabriel didn’t want to eat it solid, but Chet mixed it with water and that seemed to be appealing to him. Well, at least that’s 150 calories and a bunch of sodium and potassium, which hopefully will help his little tummy start to feel better.
In a lot of ways, what Gabe is going through is like what ultra distance runners go through during an event. Even though he’s not necessarily exerting his body with physical activity, his body is depleted from lack of calories, lack of of nutrients and when the body is low on those nutrients, the body has a hard time processing food. The result is the difficulty or inability to keep food and even water down, which is really where Gabriel’s at. So, if we can find ways to start restoring the balance of electrolytes in his system a little, then it should make it easier, and more appealing, to drink and eat.
Over the past couple days we just tried to get as many liquid calories in him through the eGels and tried to get him to drink as much water as possible. And, today we finally felt as though we made forward progress.
He woke up a little more chipper this morning – meaning he would actually talk in more than grunts. He spent the day upstairs with me while I sewed (there’s going to be a post on my sewing projects today in the near future) and by this evening, by the glory of God, we actually got him up, walking and outside for a little while. He’s shaky on his feet to a degree, but he was up and moving, and that was absolutely AWESOME to witness.
After hanging out by the “fire” on the back patio for a while Gabriel explored the yard for a while.
Small steps and R.F.M.
It was just nice, all of us hanging out on the back patio by the “fire.”
Getting Gabriel to the point where we can just keep fluids down and not expel the antibiotics that we have to give him has been amazing today. That’s a good enough start to recovery for me. It has been an amazingly miserable week. Gabriel truly has not been himself. The kid finally got knocked down. And as a parent, that is horrible to witness. But, finally we’re making progress.
Nothing like seeing my kids outside together.