The good news: J’s tube is working now.
The bad: it still needs to be changed out.
We weren’t able to get on the schedule for today, so the initial plan was to come into the hospital for IV fluids and wait for a spot tomorrow.
This was disappointing. J was tired, hungry and thirsty this morning. She told me exactly this much and actually fell asleep for a while. Very unusual for J.
We decided to test the tube again, and it’s been working. The nutrition helped J perk up a bit, and it bought us more time. We are now planning to stay home another night and go in tomorrow morning for the tube change.
A G-J tube is not a permanent solution for feeding. Sometimes it lasts just a few days; sometimes it lasts months. In our case, it’s worked for 18 months. Miraculous.
They can be tricky to change out. It needs to be done by an interventional radiologist. Julianna will likely need some sedation, and this increases risk. Sometimes they are not able to get the tube back into the right place. I’ve always known that this was a possibility. In our case, there really are no other viable options for feeding: these are the stakes.
Julianna is doing pretty well, but I know she’s worried. We’ve promised her lots of big prizes for going through all of this, and her bag of friends is packed.
As for Steve and me, we are waiting. So much of this is beyond our control: scheduling, transportation, whether or not a second tube will work as well, how much sedation J will need. When the stakes are this high, it can be terrifying.
None of us really have control, not of the things that really matter. Sometimes you learn this through a long, hard, painful process. Sometimes it comes in an instant, and things are never the same again. It’s not comfortable, knowing you don’t have control, but it’s the human condition. Things in this world are not what they are supposed to be.
Today, we just wait. God’s love for Julianna is undeniable, so we trust too.
We feel the strength of your prayers and good wishes. Thank you for each and every one.
UPDATE: Change of plan – we are going in tonight so that we can be officially on the schedule for tomorrow. Like I said, the schedule is out of our hands. Haven’t broken the news to J yet…