I missed the December appointment because of a prior commitment, so Seth took Job, so I hadn't been to SCH since SEPTEMEBER 2017. That's right: SIX MONTHS.
I was marveling about this fact as I drove up to the parking garage and the boys and I were talking about how much we had missed SCH during that time. We used to have weekly cardiology appointments and then were shocked on only have them every other week. And then for about nine months we had an appointment every month.
Of course we appreciated fewer appointments, because that meant Job was gaining strength and needed less assessment. But in a weird way, we really do miss SCH. This precious hospital has made really scary medical "stuff" easier to bear because it is such a friendly, welcoming place - sometimes even fun place (at least for the older siblings who aren't being poked and prodded but just get to enjoy the therapy pool and playground and TV).
Well, we're about to be at SCH more often! This news didn't exactly come as a shock, though it is certainly disappointing to make it official.
Job's battered body cannot currently oxygenate his blood sufficiently for his increased physical activity.
He gained weight wonderfully and is happy and healthy for the most part. Except, you know, that heart thing.
He gained weight wonderfully and is happy and healthy for the most part. Except, you know, that heart thing.
It's wonderful that Job is now walking. It's really really wonderful. Buuutttt when he walks around, he desats.
These past two weeks that he's really been moving around, gaining confidence and skill and then speed and endurance, I've been watching him slowly change color and get short of breath. I've checked his sats, but only ever while he's at rest, as wrangling the pulse oximeter and cord and a toddler just proved too difficult to get an accurate assessment here at home.
So when we got to the single ventricle clinic this afternoon I asked that we please do a stress test of sorts and monitor his O2 while he walked around.
Sure enough, his resting oxygen saturations were ~77 but dropped to the low 50s while he was walking down the hallway. Then we'd have him stop and rest and they would climb back to the mid 70s. Then we'd have him walk again (with the encouragement of his big brothers, who love to help!) and they would drop down again.
This, plus the facts that his resting sats have been slowly trending downward and his fistula is no longer audible, lead to the very strong conclusion that we need to do something to help him oxygenate. And need to do it soon.
So cath lab, here we come! We expect a phone call Monday or Tuesday to get it scheduled asap.
