But his heart can't currently sustain this increased activity so he needs intervention this month.
Job was fitted for orthodics in mid February and, amazingly, began taking independent steps the next day.
He's gained confidence really quickly and, over the last two weeks, has completely quit bottom scooting. He just walks everywhere!
But over these last two weeks we've watched him turn bluer and bluer with each subsequent step.
So at our regular cardiology appointment last week we did a stress test, hooking Job up to a pulse oximeter while he walked the hallways (with his brothers' encouragement): video
Job doesn't get enough oxygen-saturated blood and never will. Whereas you and I "sat" at ~98% (that is, 98% of our blood is saturated with oxygen) and with saturations of 90% would be admitted into hospital care, Job will at best sat between 75-85%. (Which has and will continue to cause organ injury and function impairment - we just want to limit this as much as possible.)
When he got off of supplemental oxyegn in August he was satting in the low 80s but we've watched his numbers slowly drop over the last 6 months to the mid 70s. This alone told us he would need some intervention sooner than later but we weren't really expecting to need to do something so soon (I guess I had next fall in mind).
Walking (a sharp increase in energy expenditure) has now forced this issue. At rest in the office, Job was satting at 78. He walked about twenty feet down the hallway and dropped to 50. We had him stop and rest and he climbed back up to the mid 70s. Then we had him walk and he dropped to 48.
It is so exciting that Job is walking! And it's scary. He very visibly turns bluish purple, first in his finger tips and lips, then his cheeks. Then he starts panting for breath. But he's so excited that he can move around like a big boy that he just keeps going and going. He does eventually get really tired and finally sits down but right now I'd rather he just never walk.
Cardiology didn't give any restrictions - we don't want to halt such huge developmental progress! It would be great for him to be on supplemental oxygen but it's virtually impossible to put a toddler on oxygen without using hand restraints and we're not going to do that.
But we need to intervene.
So we have a cardiac catheterization scheduled for April 27th. Caths are the best diagnostic tool to assess the state of the heart. How is the function? How is his tricuspid valve regurgitation? How are the pressures in his Glenn? And why is his blood this oxygen depleted?
We expect them to balloon some vessels or place a stent or two and therefore we plan to stay at SCH for at least one night. But we're now also tentatively planning on a surgery this spring. This will absolutely depend on the results of the cath, but Job's little half heart needs assistance and likely more than a cath can provide right now.
We had a long year off from intervention and I think we were lulled into a bit of a false sense of normalacy. No hospitalizations and only one ED visit!? So this news, though not unexpected, was and still is jarring.
It's also been a hard month as many of our heart friends have been in and out of their respective hospitals for various complications and surgeries and we've also had two deaths at our church. It's been impossible to blissfully ignore cardiac complications and death, like I at least pretended to do for the year previous. The timing of Good Friday/Easter and Job's birthday in all of this is, of course, not coincidental and has also been a large part of our emotional reflections.
We know that God is moving in Job's life for our family's good and for His own glory and we are resting in that, even in our sadness. It's important to grieve and it's important to preach truth to ourselves.
Practically speaking, we need to keep Job cold free over the next few weeks or his procedure gets bumped and we need to find that balance of letting him walk around and gain these necessary skills... but also swoop in and pick him up when he's blue in the face but not willing to take a break yet. We're on high alert right now, hoping his desats hold steady until the cath and monitoring his O2 closely.
No comments:
Post a Comment