I've been having a difficult time getting accurate and consistent sat readings because he won't sit still and let me assess him, also... but I think, maybe, just maybe, we're seeing his numbers climb.
After two days of sitting in the high 80s on .5 lpm of oxygen, I've switched him down to .25 lpm and so far he's stayed in the low 80s.
Just a week and a half ago he was at 80 on .5 lpm.
I am struggling to keep cool and collected about this. I want to declare victory and let him rip off his cannula for good.
What changed? He's been on a new medication for the last 8 days called sildenafil. It's a vasodialator, used to treat pulmonary hypertension (high blood pressures in the lungs) - and, hopefully, lower Job's pressures in his Glenn.
During clinical trials, a "side effect" of this medication was discovered and now sildenafil is primarily known as its brand name, Viagra. Because of this, the medication is $$$$! I don't know if I've ever been as shocked as when I saw the price tag for one month's supply - so thankful insurance pays the entire amount!!
We were on sildenafil from November through January, hoping the extra blood flow from more dilated veins would affect his oxygen sats, but it didn't seem to make a difference (though he also was dealing with his significant AVMs), so it was DCed. His Glenn pressures in his December cath were acceptable, though, so when they spiked for his June cath, it was postulated that the only difference is this medication.
Job's blood pressure was especially low two weeks ago in clinic, and since this med affects BP, we went in this morning to check it again and determine whether or not we could safely stay on it and yay! We can!
It is an incredible hassle, however, and I have not had a good attitude about it because of how much extra work it is for me. It's been several hours of phone calls and a lot of paperwork to get a mail order pharmacy to fill his prescription (because $$$$) and while it's now set up, I will have to do some work for it every month.
The hardest thing, though, is jumping to four med times (up from two). And very specific med times. With our Q12 meds we had a bit of flexibility. Now we don't. I've missed several doses this week because I haven't adjusted well to this new regimine.
We see Cardiology on the 24th for an echo to hopefully see his Glenn pressures drop. I will be monitoring his sats quite closely until then too, because we would all love to see him be less dependent on oxygen. While that isn't why Job got on sildenafil, it would be a wonderful perk!
I appreciate the continued prayers for his health but covet them for my attitude. My stamina is wearing thin.
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