Monday was his cardiology appointment. There isn't any new bad news. Nothing changed. We're still watching his oxygen requirements. His heart function looks good. His tricupsid valve regurgitation looks unchanged.
Do you hear the "but" coming? Job should not be on oxygen still, even with the lung injury from his cold.
Because the fistula (done on March 7th) is so rare, we were already planning to do a cardiac catheterization at the end of the month to get specific numbers on pressure and flow through the fistula and officially show that his pulmonary AVMs were gone. For research, for data purposes, for a medical journal.
Not because he would still be so oxygen dependent.
Now the reason for doing the cath has shifted.
Hopefully Job just needs more time. But it's probable we will be on oxygen for a lot longer than anyone was expecting.
Remember, Job was supposed to be off oxygen in the OR after the Glenn (back on September 16th). They kept us hospitalized for a month because he had a rough recovery and because he was oxygen dependent. Then they let us go home on oxygen for what was supposed to be no longer than three weeks. Then we did a cath in early December and discovered his AVMs. Then we had to wait for him to get bigger for the fistula.
Going in to this appointment, I was so excited about all of Job's recent progress (PT, eating, weight gain). Since we had a good echo at Mary Bridge, I was feeling pretty confident about his heart. I thought he had made enough progress off of oxygen and that the trend would just continue. I was just over all feeling all sorts of excited and hopeful.
But the appointment instead served to remind me, explicitly, how very sick Job is, how very complicated his first year had been, and how very long we might be on oxygen.
There are lots of things I know to be true. Yes, God has been and will be faithful to Job. Yes, over the next 30 years there will be countless more medical advances. Yes, we have to wait for cath results. And so on. I *know* these things. But I don't *feel* trusting right now. I'm concerned, but probably disappointed most of all.
Remember, Job was supposed to be off oxygen in the OR after the Glenn (back on September 16th). They kept us hospitalized for a month because he had a rough recovery and because he was oxygen dependent. Then they let us go home on oxygen for what was supposed to be no longer than three weeks. Then we did a cath in early December and discovered his AVMs. Then we had to wait for him to get bigger for the fistula.
Going in to this appointment, I was so excited about all of Job's recent progress (PT, eating, weight gain). Since we had a good echo at Mary Bridge, I was feeling pretty confident about his heart. I thought he had made enough progress off of oxygen and that the trend would just continue. I was just over all feeling all sorts of excited and hopeful.
But the appointment instead served to remind me, explicitly, how very sick Job is, how very complicated his first year had been, and how very long we might be on oxygen.
There are lots of things I know to be true. Yes, God has been and will be faithful to Job. Yes, over the next 30 years there will be countless more medical advances. Yes, we have to wait for cath results. And so on. I *know* these things. But I don't *feel* trusting right now. I'm concerned, but probably disappointed most of all.
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