Today was Bodie's bi-monthly cardiology appointment. As any heart mom will tell you, the days and hours leading up to a cardiology appointment are nothing short of, well, absolute nail-biting terror. The tricky thing about these cardiac kids is that they hide their defect well. They can look robust and healthy as all get-out from the outside but can literally be ticking time-bombs inside. So, each opportunity to get a look inside is a welcome chance to know that everything is aok. BUT, the moments leading up to the cardiologist saying "the echo looked great" are just fraught with way too much suspense for a mama's poor heart. Over the past few days leading up to today's appointment, I had literally just about convinced myself Bodie was in complete heart failure and we'd find out he'd need a transplant, like, NOW. (Mind you, he didn't actually have any symptoms to warrant it, but it's amazing how overactive a stressed out imagination can be - hey, I'm a heart mom - being neurotic kind of goes with the territory.)
The short story is that my worry was for nothing, because Bodie's little heart looks GREAT!!! PRAISE GOD!
The long story is that Bodie doesn't feel the same sense of relief from today's appointment that I do. He was all smiles until the tech pulled out the pulse ox. She turned it on, it beeped (mind you, she hadn't even touched him yet) and at JUST THE SOUND OF THE BEEP, he lost it. Kicking, screaming, flailing. You'd have thought she was tearing him apart limb from limb...rather than uncoiling the pulse ox cord to attach it to his foot. Um...can you say somebody has PTSD (and for once, we're not talking about mama)? It was even worse than last time - at least least time, she was able to get blood pressures on 3 out of his 4 limbs. This time, she couldn't even get one. Oh, he was SO Pissed. He screamed through his sat check (amazingly, he was in the 80's), through the myriad blood pressure attempts, through height and weight check (31.5in (75%) and 22lb (25%) for anyone keeping track), and through the ekg. He didn't really stop screaming until Janellie left the room. (As much as I hate to admit it, it wasn't the first time I was glad he only has one working vocal cord!) But then the echo tech walked in and he started right back up. Actually, the echo didn't go as badly as it did last time. The echo tech let me hold him sitting back against me instead of lying him down and he really tolerated that better (they've never done his echo that way before - heart moms who have fiesty kids like Bodie, I highly recommend it).
Dr. Kim said the echo results were great - his heart function is the BEST it's ever been. Apparently, the echo tech had to look for awhile to find his triscupid valve regurgitation, which means it's almost nonexistent - that's a VERY good thing for a hypoplast!!! Awesome echo results. We're going down on his Enalapril a bit, in the hopes of coming off it at one point or another (if his heart function can support it) and leaving his Sildenafil the same, in the hopes of him eventually outgrowing it (since he's been satting great at his current dosage since we went up on it a couple of months ago). She thought all in all he looked GREAT, she sees no reason he won't be a good Fontan candidate when the time comes - and said we don't have to come back for 2 months! YAY!
Then, we got fitted for a 24-Holter Monitor. You can guess how great that went, given that it required attaching 5 leads to his chest and then taping them down. ;-) Bodie will wear it for 24 hours and then we'll send it back to check and see if he's having any episodes of tachycardia (if he is, we may need to go back on his Propanalol).
So yes, after today's buildup and then the screaming that ensued during it (oh, and did I mention that both kids have a cold with low grade fever, so are extra cranky at the moment?), mama needs a drink. So, I think I'll be off to have one while prepping packages for Sisters by Heart (by the way, have you donated yet??? If not, please hop on over and make a donation - we've already sent out packages, and HOPE!!! to 35 newly diagnosed families and are getting unbelievably positive feedback! But we need more donations to reach all the families we'd like to).
Please keep us in your prayers tomorrow and Friday. Tomorrow, I have an appointment with my orthopedist to look at my foot. If you can believe, I am STILL wearing a post-op boot, yes, going on 3 months now. When I saw on old friend last week, she said "oh my gosh, what did you do to your foot?" I started to explain when a look of recognition crossed her face and she said "ah, yes, that was when Bodie fell and hit his head - but I didn't remember anything happening to you." Yep, I know where I am in the pecking order around here - I've been hobbling around in this stupid shoe for 3 months, but people remember that Bodie fell on his head. HA! At any rate, please pray that enough healing has occurred that I can ditch this shoe once and for all and get back to my usual activities.
And on Friday, we're going to take a trip to Idyllwild, CA (approx 6,000 feet) to test Bodie out at elevation. A lot of hypoplasts tend to do okay at elevations, but it really depends on the kid and many just can't tolerate it. The fact that Bodie lives all the time at sea level makes it more likely that he'll struggle at higher elevation. Then, throw in his pulmonary hypertension and you're kind of setting him up for a BAD response to elevation. That's all fine and dandy, except that our annual family vacation is in Tahoe, which is a tad bit higher (like, oh 6,000 feet and change) than sea level. Dr. Kim has said that as long as Bodie is doing well at the time, she might be ok with us trying Tahoe out this summer. But we need to know if Bodie can even handle elevation. Hence, the trip this weekend. Please pray that Bodie handles elevation well and we have a great weekend!
And finally, a few recent pics of the crazy kids. :-)Mental note...BUBBLE solution in the bubble machine...NOT dish soap. Oops. My silly girl... How cute is this smile???
So proud of Mr. Bodie!!! And, of course, Mommy for not having a nervous breakdown today! Did I mention that i'm jealous? I can only HOPE that Zoe's appt goes as well as Zoe's next week. thanks for the echo tip too!ReplyDelete
As you know, Zoe did great in higher elevations. Her sats didn't nudge at all. Our cardio told us to watch for puffiness and if it came, head back down the mountain and give a dose of Lasix. She did great and I only imagined she was puffy once :)
Great Job today Bennett family! Oh, and hope the kiddos are feeling better soon. Zoe has a cold too, no fever though - just runny nose and cough.
Sorry, I should've just emailed you instead of leaving this ridiculous commentary...
P.S. Have a drink for me!
Yay for a fantastic appointment today! I don't blame Bodie at all for exercising that vocal chord...he has every right to! :)ReplyDelete
Do you KNOW that Derrick STILL doesn't weigh 20 lbs and he's going to be TWO in two weeks?! Go, Bodie, go!!!
Hoping all goes well on your get-away, and have a drink for me too! :)
So thankful all is well.ReplyDelete
Great news at Bodie's checkup. YAY!!ReplyDelete
Hope all goes well for your weekend getaway so you can go to Tahoe this summer!! Praying for all of you!
Love the pics! Your kids are so cute!
Such a great update for Bodie!!!ReplyDelete
John (3 months post Glenn) also has a paralyzed vocal cord... has Bodie's ENT given up yet on it moving again? It is kind of nice that they aren't terribly loud sometimes. Good to know about the elevation, something I hadn't really thought about (we live in flat Texas).