In my post last week, I mentioned that we planned to try Bodie out at elevation. Well, he decided he wasn't down for that and decided to get an ear infection before we left town. Make that a double ear infection. His pediatrician took one look at him and said single ventricle + underlying pulmonary hypertension + double ear infection = NO altitude. Bummer. But we made the most of it, spending the entire weekend in Palm Springs with Gigi and Popo instead! The kids had a great time. Well, Sierra had a great time...
(See his little leg there? Yep, he's trying to climb out of the spa himself.)...and trying to get as close to mommy as humanly possible (I am not kidding when I say I am fairly certain that he views me as his long-lost body part that was erroneously severed at birth). His separation anxiety was at an all time high. Par for the course for Bodie when he's sick, but definitely made for an interesting weekend.
Then we got home and things really got interesting...since he had been fussier than usual and coughing and wheezing a lot on Monday, we put him on pulse ox when we put him to bed...where he sat in the low 70's (his baseline is low 80's, but he can drop to the high 60's when he's sick or having a pulmonary hypertension episode). Ok, not excited about him being in the low 70's, but understandable for him given that we know he's sick. But then, he quickly dropped...and dropped...and dropped. AND SAT IN THE MID 50'S TO LOW 60'S. (For you non heart-parents out there, this is NOT good (although pulse-oxes aren't really reliable under, say 65, it's still not good). For you heart parents out there, you can pick your jaws up off the floor now.) I was sitting in disbelief staring at the monitor, just willing it to go up (for the record, I haven't found that method particularly useful for increasing sats, but I can't seem to stop attempting). Then Dusk sat with me, as we got more and more panicked. We woke Bodie up, who, once he got over his initial disorientation, thought it was really funny that mommy and daddy wanted to play with him. He wasn't having any breathing difficulties, was acting fine and his color was beautiful...but his sats sucked.
Luckily, we have the world's BEST cardiologist (we love you Dr. Kim!!!), who thankfully didn't mind fielding a call from me at 9:30 at night, and talked me down off the ledge. We decided I could stop packing our hospital bag and that no, if everything else looked fine, he has such a history of crazy satting and was stable enough otherwise that we didn't need to rush him up to CHLA that instant. (THANK GOD because I was in a mad panic, with my mind swirling about how we were doing this all again and how Bodie was going to hate me for taking him to the hospital and how Sierra's birthday party was this weekend and how could this be happening - this was supposed to be the day about HER!!!) (Man, PTSD does some nasty stuff to your psyche.)
Anyway, we decided there was a good chance it was a nasty pulmonary hypertension episode and our plan was to push fluids, watch him, increase his pulmonary hypertension med (since he was ready to go up on it with his recent weight gain anyway) and take him in this morning if his sats didn't improve. So...watch him I did. Every 20 minutes all night, I'd pop up in bed (not from an alarm clock mind-you, from my internal freak-out mode), glance at the pulse ox, freak out that the number wasn't higher, and then go back to sleep for another 20 minutes or so (not a fun way to spend the night and probably the main reason a lot of cardiologists tell you not to have a home pulse ox). Oh, and for the record, every time Dusk woke up and glanced at the monitor, the number was always higher. What the what? How is that fair???
His numbers were better this morning, but still highly variable, so we took him in. His regular pediatrician couldn't get us in until the end of the day, so we went to the urgent care associated with her office. Wouldn't you know it, he was satting 82 while we were there. The doc did a full assessment and said he looked great and she saw no reason to think he had pnuemonia, which had been my concern (no fever, no difficulty breathing, etc.). She said to bring him back if he started having other symptoms, but he looked great to her (she even told me he didn't look at all cyanotic to her, which is music to a single ventricle mom's ears). Since then, he's been fine. Sleeping, well, like a baby and satting in the high 70's and low 80's since we put him down. General thought is that he had a really bad pulmonary hypertension episode, and thanks to his increased Sildenafil, he seems to have gotten the upper hand on it and turned the corner today.
So, there you have it. All's well that end's well. Except for the couple of years that were shaved off my life last night.