Last week on the news I heard a fresh version of an old story. Man was working on daughter’s car. Car jacks fail. Man gets pinned under car.
Daughter sees dad pinned. Goes over to car, says a mental “Shazam!” and miraculously lifts car off dad. (In the future she never drops the subject as she angles for dad to pay her unfortunate gambling debts, but that’s not important right now.)
When I’m in the hospital or somethin’s a-brewin’, Shazam!, I can get a deusy of a blog post out as easy as toastin’ a Pop Tart. When it’s just another day on the lake, what can I say, it’s more fun sitting on the dock watching the boats go by than writing.
Seriously, three middle-aged chicks just floated by on their party boat playing power ballads (…and I don’t wanna miss a thaang…). One was talking about how her homemade Buffalo wings kicked ass. The other was smoking a stogie. How can you beat that!
Still, I’ve been slackin’ so I thought I’d give you a straight up update. Or is that a straightupdate? Whatever.
Here’s what’s been going on life and health-wise, and a little by the numbers update just because.
Overall, I’m good!
With me, that’s always a “for now,” but for now, nothing much going on. I still breathe faster than most kids, haven’t been robust enough to shake the heart meds yet despite an attempt or two, and have one “well, why don’t you come in for an echo tomorrow” story that I haven’t told you about.
I still have the cardiac hill to climb. The jury is still as to whether I’ll get better or get worse, but stable has been the word my last cath in January.
Big picture updates:
Feeding: Ain’t used the feeding tube for food for a little more than a month! A year ago, Mom (saint!) used to pump for 30 minutes. Try to feed me by mouth for 30 minutes and get nowhere, then plug me in to the feeding tube for 1.5 hours. All the food would go in. I’d be happy for 5 minutes, and then throw it all up. If you’re doing the math, that’s 2 hours and 35 minutes. I ate every 3 hours, so that would give Mom 25 minutes before starting all over again. All day, for months and months.
No tube now for food. Only, meds, and thank the lordy-lord for that, because I still take meds at 7am, 9, noon, 3pm, 6, 7, 9, and 11.
Eating-wise, I slug back my fill of prescription formula and that’s been enough. Still don’t eat much for solid foods, though I like bacon and chips and salsa. Anything salty…mmmm. Not too much sweet, but today I enjoyed a few licks of my first Congdon’s Doughnut.
I know what you’re thinking. “Perfect diet for a cardiac patient.” In any case, I don’t really swallow anything. As you might imagine, the ‘rents have worked admirably on vegetables, appropriate meats, purees, fruits, and other typical baby fare, but I ain’t havin’ it. And the feeding therapist? I point and laugh at the futility.
They keep saying, “Let’s just get him to swallow, and then we’ll work on the rest.”
Good luck with that.
Cardiac: To the extent that we know, it’s no worse. As is my wont to say early on with heart updates, my pulmonary valve is still broken and needs to be replaced at some point. Odds are this is a contributing factor to why the right side of my heart remains dysfunctional.
When replaced? Months to years. If I make it to 8 years old without replacing it, which is unlikely, I may be able to get a new valve by cath. Odds are it’ll be an open heart surgery before that at some point.
I went to the hospital several weeks ago with a mini-scare. Dad gets heart and respiratory rates while I sleep. Normal (non-cardiac) kids my age would breathe 20s or 30s for breaths per minute. My norm is 30s and 40s, but it was elevating into 40s to 60s for a week or so. And I’m still on 3 diuretics and 4 heart meds.
Normal heart rate at night should be 80s or 90s. Mine was more 1-teens to 120s.
Talked to Wayne and he said to come in for an echo. We were there the next day and everything looked stable compared to 6 weeks earlier. Meanwhile, we hadn’t gone up on my propranolol (heart rate slowing) med in a while. We bumped it up.
What was up? We don’t know, but here’s a guess: I was on a milk-crazy phase and drinking a lot. My weight was shooting up pretty fast (3lbs in 6 weeks), and I was looking positively chubby. Perhaps I just had some “carryin’ a little too much in the midsection” goin’ on, and like anyone who has a few more pounds on than they usually do, was breathing faster.
I promptly got a cold and stopped eating. Dropped some weight. And next thing you know, the numbers were back to normal. Was it the chubs? Who knows.
Meanwhile, the numbers are looking decent now – heart rate 80s – 90s when sleeping and 30s – 40s for respiratory rate. Steady as she goes, but still on all the med supports.
In all, on 9 medications, 7 of which are cardiac related.
Oh, and I still am on the border for pulmonary hypertension. Currently in check, but my RPMs are running sorta high in the right-sided pressure department. This is bad if it gets any worse, but could be manageable if it stays the same.
Next echo and progress discussion later in August.
Life: Holy ba-jeezus, I have a sister! Alexandra “Lexi” Rose. I don’t know much about her yet except that she must have Velcro on her lips as she is always attached to Mommy. Little chick never stops eating.
I contemplated carefully how to interact with her from the get-go. Brother/sister relationships can be a tricky lifetime of negotiated peace. Decided to try the nice-guy route and see how that plays out. I give her kisses and hugs, rock her in her chair, and bring her binky to her if she drops it. So far so good.
Boston Children’s neurodevelopment department follows cardiac kids closely. I had a big 3 hour neuro exam. Even though it was right during naptime, I was a peach. I’m behind in gross motor (walking/crawling) and feeding (duh), but besides that, I’m great. While we’re not comparing (because my parents would never do that!), I’m months ahead in social, emotional, cognitive, language, and such. I say so only to note that for me the bad ticker is the only issue. All other systems are go.
My main method of transport is still butt scooting, but starting just now to crawl. I’m a great cruiser and can get around standing up as long as I’m holding the coffee table.
I have about 40 or so words right now. More seem to come every day. While I play dumb sometimes to keep people guessing, I understand just about everything.
Everything else is odds and ends. Trips to the Children’s Museum. Birthday parties. Walks and parks. Playdates.
Oh, and I have a prom date. Told my friend Emma that she needed to stay strong while waiting for her heart transplant so I could bring me a cougar to the prom. She got a heart last week. Score! (The heart, not at the prom. I would never be so presumptuous.) Best wishes for a speedy recovery, Emma.
I guess that’s about it. But just for fun, here’s a little update “by the numbers”.
My last by the numbers was August 1, 2012 when I got home. Almost exactly 1 year ago. Now, you might remember, I went in for a clinic visit at 12 weeks old, and that turned into an “uh-oh…two surprise open heart surgery” 3 month trip.
Then: 90: Days this hospital admission
Now: Nothing since January.
Then: 126: Total days admitted since birth
Now: Just a few weeks more for methadone withdrawal, RSV, and my January mitral valve dilation.
Then: 166: My age in days
Now: Too much math. I’m 17.5 months.
Then: 76%: Percent of my life living in the hospital
Then: 1: Replacement valve from cadaver
Now: Failed valve. Managing by medication ‘till I need another.
Then: 1: Replacement valve from cow
Now: Holding steady. Moo…
Then: 50% or greater: “Percent systemic” blood pressure that would indicate I’d have problems with pulmonary hypertension
Then: 100%: My percent systemic when admitted
Then: 45%: My percent systemic now
Now: 50% plus or minus. Not worse, really…
Then: 9 lbs. 5.21 oz.: My weight when admitted 3 months ago
Then: 8 lbs. 5 oz.: My lowest weight this admission after surgery #2
Then: 10 lbs. 0.5 oz.: My weight now
Now: 21 lbs 9 oz.
Then: Every meal: times a day I’d throw up with full on “huuaahh huuaahh huuahh” heaving.
Now: Haven’t thrown up in a month since getting off the tube…not once
Then: Does not compute: Where I fall on typical baby growth chart
Now: In on the low side. Not sure where. 20th percentile plus or minus. Good enough to not matter.
Then: 13: medications I’m coming home with
Now: 9 meds. I got off the narcotics, but that’s about it.
Then: 1: Medications my cardiologist would like to see me on in a year or two (Aspirin)
Now: Workin’ on it.
Then: 49,658: Page views on www.echoofhope.org since October 2011
Now: 106,771 Page views
Then: 52: Countries of origin of www.echoofhope.org visitors in the last 90 days
Now: 96 Countries of origin all time
Then: 467: Likes on my Facebook fan page www.facebook.com/dangerschultz since setting it up earlier this month
Then: $1,303,593.62: Current medical bill since birth, not including fetal interventions and last three weeks of hospital stay.
Now: A little over $2,000,000 total
Then: 4 to 6 months: Plan to re-admit to Children’s to balloon my Melody valve
Now: That happened and was needed. Next valve work…dunno when.
Then: 15: Minutes home so far…
Now: Add a year. Here’s to another 100 of party boats, stogie chicks, and their power ballads.
Always: Later peoples!