A couple posts ago I talked about the easy days versus the hard days. No, not much has changed -- don't fret yet like me! -- but that's what has made the last several days this week so hard.
While we were visiting Calder Wednesday night his oxygen saturation dropped precipitously as we stood there, only because the nurse turned him over. Such a small thing, and something they do at least every four hours when he has his hands-on care. For so long I'd thought to myself, as so many assured me, that everything was going to be fine soon. All I had to do was brace myself for this "roller coaster ride," tentatively scheduled to end with a happy ending of some variety at the end of October. But on Wednesday, I was made painfully aware of just how sick a baby Calder is and how far he still has to go. And how we may have some very big decisions to make in a very short time.
In short, Calder has some degree of bronchopulmonary dysplasia (BPD) (not officially diagnosed, I don't think, until he reaches his original due date), which means that scarring or inflammation in his lungs is making it difficult for him to get the oxygen he needs. To help his lungs develop properly, it's really important that we get Calder off the conventional ventilator, which only continues to add to the damage already there. To do this, at the moment, the doctors are trying to use relatively benign, though not without side effects, treatments: a diuretic to get rid of the extra fluid in his lungs, a form of caffeine to dilate his airway passages (bronchi and bronchioles) in the lungs to decrease resistance and increase airflow, and plenty of calories.
His gases have been consistent, which means his lungs aren't getting worse, but they really aren't getting better, either. To get over that hump, sometimes doctors will prescribe steroids, but the one most commonly used, dexamethasone, can have extreme long-term side effects, like cerebral palsy or death, and short-term effects that aren't very desirably either. Another steroid option is hydrocortisone, although its effects on the intestines are debatable, a dangerous risk to take with preemies. In short, the evidence available at this time isn't very solid, and it's not a decision you want to be faced with. The plan now is to try to extubate him on Sunday, to give him a chance to shine on CPAP (support through the nose rather than the mouth), before we are faced with the decisions on steroids.
As down in the doldrums as that all sounds, we're still optimistic about that happy ending! We are moving out of our 1BR into a 2BR nearby in just a couple weeks to make space for our little guy when he finally gets to come home. Today we are pulling the trigger on our glider, and this weekend I will be back to researching that perfect car seat since we're going to need a good one!
We also finally got some Calder footprints, thanks to one of the nurses who noticed he didn't have any fun paraphernalia yet at his new home (they made us take home anything we'd had up at Alexandria.)
We know Calder is a fighter, and we are praying that he really shows his stuff this Sunday. Please pray for him, too, or send some extra-potent positive thoughts his way. :)