...you take the bad
You take them both and there you have
The facts of life, the facts of life
-Alan Thicke & Gloria Loring, theme from "The Facts of Life"
I started thinking yesterday about the sheer amount of time we've spent in doctors' offices and hospitals, trying to entertain kids. We really should write a book called "How to Entertain a Wiggly Child with Nothing but a Tongue Depressor and a Cotton Ball."
Friday was one of those all-day-in-medical-land kind of days. We'll start with the good...
On Friday morning, Jay went back to the cardiologist for a follow up. He didn't have an echo at his last visit, so we were certainly anxious get a closer view of how his heart is doing. Drum roll please... he's doing great! The improvement to his heart function (how hard it squeezes) seems to be leveling off. And while still not normal, it's certainly within acceptable ranges. He won't likely ever be a long distance runner, but his heart is beating strong enough for him to participate in normal activities, climb stairs without a problem, etc. He's come a VERY long way from the ECMO days where his heart was not beating at all. When I stop to think about it, I get so overwhelmed. Joyous happy thoughts - but more than I can comprehend.
The other good news is that he can stop one of the heart meds - the one that he was taking for the heart rhythm problems. This is a scary thing for me because it's hard to know if he's having arrhythmia issues. His particular arrythmia would be life-threatening if it were to occur again, so we'll be praying that's a distant memory. This particular medication stays in your system a long time, so he'll do a study (wearing a holter monitor, which is like a 24-hr ECG) in 6 weeks when the drugs are really gone.
I gotta say, it was one of the smoothest visits ever, thanks to A LOT of preparation and discussion about it:
What will we do first?
Where do you think the nurse will take your temperature?
Will she take your blood pressure on your arm or your leg? (Answer - both arms AND a leg.) Will we see Cathy? What do you want to tell her? (Answer - "I am so brave for my finger sticking." Both Cathy and Dr. M. thought it was hilarious to hear a 2 year old use the phrase "finger sticking!")
What will Ms. Lindsay put on your chest for the echo? (Answer - that goopy gel and her camera.)
But like with so many things, he was great when he knew what to expect. So all was good in cardiology world.
Then, you take the bad...
I haven't talked about it that much here, but Luke has been congested since, well ... July. He gets a little better then gets worse again but, truly, there has not been a single day that he hasn't had snot fangs. (Thanks MS for one of my very favorite descriptions!) We took him to the ENT, and surgery is in the near future (tubes in, adenoids out, tonsils still TBD). He's taken at least 5 different kinds of antibiotics. We've tried everything short of surgery to no avail.
I don't worry about it all that much because he's a happy little snotter. He never gets fevers, and never seems all that concerned about the rivers of green gunk. But on Friday, he was miserable. He screamed for nearly 4 hours at daycare (while we were at the cardiologist with Jay). I picked him up at noon, and he continued screaming for me until he finally crashed. Clearly, not feeling so good.
I took him back to the pediatrician, and (no surprise) he has a raging double ear infection. Uggh. Given the range of oral antibiotics he's tried with no luck, he got the triple whammy ... rocephin shots, 3 days in a row. And a strong encouragement for mom & dad to schedule said surgery sooner rather than later.
While walking around (and around and around and around and around) the circle of offices at our pediatrician's this morning, I saw a list of the pediatric specialists that they usually refer kids to:
ENT? Check (kid 1) and Check (kid 2).
Cystic Fibrosis sweat testing? Been there, done that. Got the t-shirt.
Cardiology? More times than I can count.
Allergy/Immunology? Yup, got the epi-pen, too.
Radiology? Oh yeah. Jay's had enough chest x-rays to light up the night sky.
PT/OT/Speech? Yup, been there.
Labs? Rex and Duke, on a regular basis.
I do know that we have it better than a lot of kids with special needs. I truly am so grateful that we live in a city chock full of excellent medical professionals, with so many pediatric specialists. But man - that's a lot of co-pays!