ughhhhh I’ve started this entry 4 times… I’m not sure why I’m struggling so mightily. I guess mostly because I’m very, VERY good at bringing attention to my kids’ numbskull antics but not so great at reliving that moment when my son looked at me with tears in his eyes and asked, “mom… am I gonna die?”
Spoiler alert: he didn’t die… but many before him have; and, in part, we owe his not dying to the fact our life is completely draped in weird anomalies.
Enough of the cryptic, dancing-around-the-topic stuff… Cal spent 5 days this summer in Children’s Hospital out in Pittsburgh; he suffered from rhabdomyolysis – rapid breakdown of skeletal muscle, after an intense workout, due to inadequate hydration.
Basically… he flipped a bunch of tires one hot, humid afternoon and didn’t drink enough water. The lab value used to monitor this condition is CPK (creatine phosphokinase), its an enzyme that gets into the blood stream when there’s muscle injury; a normal CPK level is 22-198… Cal’s peaked around 48,000.
Three and a half days into our ordeal we finally got a doctor who was able to fully explain the situation (we had a few who gave us minimal information but none explained it like this one). This doctor was petite, I mean like… 4’10” under 100 pounds petite; she started with: “I’d never be able to reach the numbers Calvin reached, I just don’t have that much muscle mass; this was only possible because he’s such a muscular kid.”
We guess he was dehydrated going into practice – the boy drinks 30 to 75 gallons of milk daily (not really… it’s probably only 5 or 6) but milk, with all of it’s benefits, does not hydrate. So, he was dehydrated going in and then didn’t drink during the (numerous) drink breaks throughout practice. Yah… I could smash him.
The practice was held on Wednesday evening. Wednesday morning Cal got his every-6-week bee venom shot; he’s allergic to bees – he’s outside a lot – so he gets shots of increasing amounts of bee venom to dampen his allergic reaction. They alternate sites, right arm then, 6 weeks later, left arm. Wednesday was leftie. (I promise this comes into play later… I’m not just rambling). So, Cal got a shot Wednesday morning and lifted intensely Wednesday evening.
Thursday morning he said his left arm hurt. I assumed he strained a muscle and suggested ibuprofen and ice (Dan concurred… not that I needed his validation, mind you…). Thursday evening Cal’s arm was neither better nor worse; still difficult to bend it and it hurt to the touch.
Friday morning he said his left arm HURT and his right arm was starting to ache; he wasn’t able to bend either to any great degree. Pharmacist-mom gave strict instructions to continue the ibuprofen and icing. I was in contact with Mike, our school trainer, and he felt we were doing right. (I’m not sure that I’ve ever experienced 2 men simultaneously agreeing with me… so I had that going for me).
A few times throughout the day on Friday I asked Cal (via text) if it was swollen; “I dunno… I can’t see it.” For those of you new to my family… he has 2 sisters – because I didn’t think it was anything more than a muscle strain I didn’t even try to explain the daunting logistics of “hey [sister], could you look at my arm…”
I got home from work Friday evening, took one look around the house and started into my daily barrage of “what do you 3 DO ALL DAY?” The girls – true to form – shrugged and went on with their lives; Cal, being Cal, jumped up, headed to the kitchen and started to dry dishes – only he was doing it with his arms totally straight. I chuckled and said, “what in the heck are you doin’ ya goon?” His eyes just about broke my heart, “I can’t bend my arms mom, they just hurt so bad.”
I took one look at his left arm and said, “put on good underwear, I’m taking you to the ER.” (we had an incident once with bad underwear and a doctor’s appointment… in that he was not bleeding or unconscious I felt we had the time to avoid embarrassment).
“I don’t think I can change my underwear mom; my arms won’t bend…” He’s 14, I wasn’t doing it. To this day I don’t know what shape his undies were in… I just thank God all the hospital stuff was waist up.
We checked in to the ER and the doctor diagnosed him pretty quickly. “Rhabdomyolysis – severe muscle breakdown due to dehydration. We’ll hang a bag of saline, flush him out and send you guys on your way.”
When Cal and I were alone he asked, “How long is this going to take, momma?” (you see… Fortnite was calling him). I looked at the IV flow rate and said, “hmmm couple of hours or so.”
he
was
crushed
…5 days later we walked outta Children’s Hospital.
At the ER his CPK levels were off the charts, literally. There are 2 tests used to monitor CPK levels; one measures up to 14,000 (and is presumably more precise?), the other has no limit. Our ER only uses the 14,000 test. After 2 bags of normal saline his values were still reading >14,000. After 3 1/2 bags Cal finally had to pee.
Over 3 liters of fluid was pumped into his body before he had the urge to pee… my boy was dangerously dehydrated. By 11pm the ER doctor was showing concern; it was decided Cal would have to go to Pittsburgh so that specialists could monitor his kidneys and overall treatment (that amount of fluid is rough on the heart and the amount of waste needing to be flushed put his kidneys in real danger).
At this point Dan (who was home with the girls) and I were scrambling. Alex had a softball tournament the next day in State College and I was scheduled to work – it was now on Dan to get Alex to her tournament (90 minutes away) and get back to town to open the pharmacy by 9am (Pop… who usually saves our bacon in times of need – wasn’t able to do much being less than 4 weeks out from open heart surgery). We devised our plan, Dan went to bed and I began a sleepless vigil at my son’s bedside.
At one point, remembering that I told the doctor we hadn’t given Cal anything, I got up, found our doctor and said, “I never mentioned that Cal has been taking 800mg of ibuprofen 3 times daily.”
“WHY? Why would you do that?”
“Uhm… well, we thought it was a muscle strain and he weighs just over 200 pounds…”
“Well, let’s just hope it didn’t do more damage to his kidneys…..” he then shook his head and turned back to his paperwork.
I went back to my boy’s room, dropped into my chair and questioned myself for 7 hours. I racked my brain trying to recall every thing I ever learned about ibuprofen. I berated myself for giving this boy ibuprofen when his kidneys were in such a precarious situation. Then I asked myself how I was supposed to know his kidneys were in trouble. I let the tears fall down my face… wondering if I’d permanently damaged my son. I’m not only his mom but I’m a pharmacist – DO NO HARM – that’s the pharmacists oath. What the hell had I done???????
At 5(ish) I couldn’t take it anymore and texted Dan, he messaged back that he was up and moving so I called immediately; I was a mess, “Were we wrong??? yes, obviously knowing what we know now we wouldn’t give him ibuprofen but we didn’t KNOW THIS then…” My husband, my greatest cheerleader, my rock said, “Screw him… we did what any parent would do in that situation.”
It didn’t give me back those 7 hours I spent blaming myself; but it did stop the blaming… mostly.
I used my sleepless, early morning hours to arrange a drop off so that Dan could meet Alex’s coach enroute to the tournament; thereby saving him the 3 hour round-trip to State College and giving him time to see Cal before we left for Children’s.
The ER doctor was leaving not long after Dan got there. He walked in and wished us luck. Dan said, “Should we have done something differently? I mean, we gave him ibuprofen assuming a muscle strain… what should have been our course of action?”
To the ER doc this question probably seemed benign; to Dan’s wife, who’s been with him for 23 years – it was a full scale assault. My husband was mad.
To his credit, the doctor – who’d had the same 7 hours to reevaluate his response to me – said, “You did everything right. As a matter of fact, if he were my kid… we’d STILL be at home pushing ibuprofen and ice. Score one for mother’s intuition.”
I’ll never be able to describe the weight that lifted from me at that very moment; but I’m also left wondering if he would’ve ever freed me from that burden had Dan not directly confronted him…
After 9 hours of being planted firmly in limbo, the hospital finally scored us an ambulance for the trip to Pittsburgh. They loaded us up and we headed west. I’ll start adding some pictures here – let it be known, Cal was not impressed by my desire to photographically journal our adventure. In my defense, I was trying to keep it lighthearted, I knew he was worried and I couldn’t let him know how worried I was, too.
It always surprises people when they learn Cal is a nervous kid; he’s so confident and things come so easily to him, it seems almost counterintuitive for him to be anxious, but he is. It was up to me to be the strong one… not something I do well when it involves my kids and illness.
The trip to Children’s is about… 2 hours 15 minutes. Not too terribly long but for a 14-year old, nervous kid who’s had 4 liters of fluid pumped into him – that’s a long trip with no bathroom.
He was actually in agony by the time we pulled into the ambulance bay at the hospital. The last 30 minutes of the trip was extremely difficult to watch – the ambulance didn’t have a portable urinal so Cal was on his own. I was so angry at the EMTs; at one point I literally begged them to pull over but the area wasn’t conducive. As we pulled into the hospital I could sense relief washing over my boy; I told the ambulance guys, “Be easy, don’t jostle him…”
Whether from my instruction or outta compassion, they got the gurney to the ground as gently as humanly possible; then the driver walked up to the locked entrance and turned to the other guy, “You have any idea what the code is?”
I can SORTA laugh about this now… I mean… it IS typical of the life of an Iseminger. But at the time, I literally coulda sliced some jugulars. Cal was actually gritting his teeth at this point because his bladder was so excruciatingly full.
Once we got inside and he used the bathroom, I relaxed a little… we were where we needed to be and I was sure everything would be fine; ok… I’m a worrier by nature – actually some would say I’m a fatalist – so I was far from ‘sure’ everything would be fine but I had some hope…
Truthfully, Cal didn’t LOOK sick. He didn’t FEEL sick. It was all just a little surreal. There we were at a leading pediatric hospital with my 5’8″ son who weighs 204 pounds and he looked and felt fine. Not one single bit of it made any sense at all.
The admission team (1 doctor, 2 nurses) asked us some questions then asked me to leave the room; due to Cal’s age they are required to ask questions without a parent present. I paced in the hallway until the doctor came out; he was incredulous, “I have never, in all my years of dealing with this issue, seen it present as your son’s condition has presented with the swelling of his triceps.”
And it was at that very moment that I decided to never again question why my life is such a patchwork of odd, random, weird happenings. How many times have I heard, “How does this stuff happen to you”? Usually it’s unbelievable situations that make my life entertaining and create fodder for this blog; this time… it quite possibly saved my son’s life.
Cal’s condition usually presents as tea-colored urine and (because of the ubiquitous level of muscle breakdown) all-over body aches. Cal’s only symptom was swelling and tenderness of his triceps…
His entire musculature was breaking down and his only symptom was swelling of the triceps…
the doctor was baffled. I suggested the bee venom shots might have contributed and that’s still being debated; but what I do know is – had this case of rhabdomyolysis presented in the usual course I would’ve never gotten him to the ER as quickly as I did (he would’ve never talked about the color of his urine and all over body aches would’ve not prompted anything more than… “You’re soft.”). Our weird life, at the very least saved his kidneys and at most… his life. This doctor echoed the ER doctor’s sentiment, “Your mother’s intuition saved him.”
I’m not convinced – I think anybody watching this kid trying to dry those dishes would’ve acted as I did… but it’s still nice to know that – with all my claims of being the worst mother in the history of mothers – I might actually have some sense of nurturing buried deep in my core…
I can’t say enough about the staff at Children’s Hospital. We were in the observation unit for the first 2 1/2 days. Those nurses were exceptional. We were moved to a regular floor for 2 days and those nurses were wonderful. We tried not to bother any of them; I can’t imagine their workload and quite frankly we didn’t need to waste their time. But any time we called them or asked them a question, they took care of us as if it were a pleasure to do so.
Actually, the entire facility is remarkable – they have thought of everything a sick child could want or need… we were lucky to leave quickly and with a positive report – I had the luxury of avoiding what so many parents at that hospital are faced with… I also have the luxury of pushing it out of my mind when I don’t want to think about it….
I’ll never forget Cal looking at me and asking if he was going to die… I don’t know how parents go about the task of telling their child, “yes, you are going to die.” Our visit was 2 months ago, it didn’t happen, and yet I’m sitting here with labored breathe thinking about it…
Our stay was a roller coaster to say the least. We expected the CPK levels to drop with every liter of fluid. Well… that’s not how it works. First of all – the muscles broke down (due to dehydration combined with an intense training session) which led to waste build-up; apparently that build-up acts as a sponge and further absorbs bodily fluids thereby intensifying the dehydration and thwarting the body’s ability to excrete the waste.
Then… his kidneys had the overwhelming responsibility of filtering all of that waste. But, what we didn’t realize: the process isn’t a finite thing – the CPK continues to enter the bloodstream as long as there is muscle injury (meaning… until it’s repaired); in Cal’s case – it continued for the first 3 days of our stay – so his CPK levels continued to rise…
the problem was… nobody explained this to us until the petite doctor… so his levels were continuing to climb when we were expecting (hoping for) a decline; with each increase our hearts dropped. Ironically the numbers started to decline at the same time we had our explanation, I wouldn’t say the knowledge was then moot but I can say, it sure woulda been good information to have days prior.
The roller coaster continued with the mental torment of his escalating blood pressure readings (due to the massive amounts of fluid being pushed into him), the false CPK readings (an 11,000 early on that gave us false hope and a 100,000 later that gave us false dread) and just an inability to fully comprehend what was going on.
Listen, I have a medical background – albeit a limited medical background, but I know some stuff… and yet I felt completely incapable of comprehension. I can’t imagine how non-medical persons deal with this stuff. Ever since my mom got sick I’ve wanted to start a foundation that sends a medical-type person with a patient (and family) in these situations; a completely disinterested 3rd party to listen in a non-emotional way and then be able to explain it later, when the patient can fully absorb the information – our experience at Children’s Hospital has furthered that desire.
As a side note, I can say with a high degree of certainty Cal won’t be looking for a career in the medical field; he gagged every time he had to handle the portable urinal (used to measure his output). “Oh [gag] mom it’s [gag] warm.”
For 5 days we lived in 4 to 6 hour increments – it was 4 hours between blood draws and and another 2 hours for the results. I didn’t sleep much – worried about Cal, waiting on levels, worried about my family back home, worried about the store and just the level of discomfort that comes with being a non-patient in the hospital…
While I sat watching Cal sleep one night I started googling ‘hydration tips’ and came across the Kendrick Fincher Hydration for Life Foundation kendrickfincher.org/kendrick-fincher-bio
Kendrick, at the age of 13, lost his life to complications from heat stroke after his first ever football practice (rhabdomyolysis and heat exhaustion are – generally – less severe heat illnesses); Kendrick’s mom, Rhonda, started the foundation in an effort to educate athletes about the importance of hydration.
I immediately drafted an email to Rhonda (who seems to work every hour of the day for the foundation), telling her of our plight. By mid-morning the next day we were working on piloting a program at my kids’ schools. Rhonda has been a wealth of information and an amazing cheerleader; I’m sure the program will evolve over time but I’m proud of what we’ve already accomplished.
I don’t hold the coach or school responsible – Coach gave drink breaks, Cal just didn’t drink. But I do want them to learn from this and I don’t want any parent to go through what we went through (or worse). With that in mind I contacted our superintendent and athletic director; I told them I’d like for every student athlete to be required to sit through a hydration lecture before taking the field (or court).
I’m proud to say, our first such “clinics” are being held August 15th (I’ll publish this blog afterward so that I can include pictures from the event). The pharmacy is sponsoring the event and Mike, the trainer, will be teaching our kids how to stay hydrated and stay healthy. From this point forward a hydration clinic will be held prior to every sport season; I’m sure Mike is thrilled with me…
I never talk to Rhonda about Kendrick – in our many emails and messages I’ve never been able to say anything profound because… quite honestly, I just don’t know what to say to her. She’ll read this blog (I’ve been promising it to her for weeks) and still I don’t know what I want to say to her because I don’t know how to put it into words.
How do I express the level of awe I have for this woman who surrounds herself with the very thing that took her son’s life for the sole purpose of saving somebody else’s son or daughter? Rhonda works tirelessly to spread information about the importance of hydration; making sure Kendrick saves every life he possible can… Not only does this woman somehow find a way to get out of bed everyday; but she does so with the hope that no mother knows her grief.
Not all heroes wear capes… sometimes they create foundations.
Personally, I’m stuck in this weird place where I find myself trying to reconcile my very different emotions… One minute I’m so immeasurably grateful that my boy is healthy and vibrant and fully recovered and the next I’m wracked with overwhelming guilt.
Why is my son ok and Rhonda’s isn’t?
I can’t imagine how many times she’s asked the same question… I only wish I had an answer…
In my heart I believe Cal is ok because anything else would’ve crippled me. I’m able to push this hydration agenda because he’s ok… I couldn’t do what Rhonda does, I’m not that strong; Cal was spared so that we could spread Kendrick’s message…
We were sent home on June 20th; 5 days and 21 liter-bags of hydration later. The doctors wanted Cal’s CPK level to drop to 8,000 before discharging him; they actually let us go when he hit 13,000… the degree of downward trend was enough for them. Dan, the girls and Pop came to get us… I was never so thankful to listen to those girls bicker – all.the.way.home.
When my family pulled into the patient pick-up area Pop was the first one out of the car… most of you know the relationship between Calvin and his grandfather… There they were, both banged up, Pop – weeks out from heart surgery, Cal – covered in needle holes, clinging to each other as if their lives depended on it… for those two – sometimes I think they do.
And now, because my blog is meant to bring laughter I leave you with this:
We did not have many clothes with us in Pittsburgh. We were 2+ hours from home, I had no vehicle and even though I had time to zip home before we left our local ER, I was so out of sorts I only grabbed underwear for Cal and a t-shirt for me… that’s an honest to goodness true story. Do you know how many people come to me for advice because they think I have my life together? A lot.
…and I packed 1 pair of underwear and a t-shirt…
Anyway, we were able to buy some clothes at the hospital gift shop ($105 for 2 pairs of sweatpants, a t-shirt and a 3-pack of underwear); the only underwear available for women were cotton, white, 2XL panties. I’m devastated to say — they fit. I mean they didn’t FIT and I probably won’t wear them on date night but I certainly didn’t need the safety pin I was hoping I’d need….
So, with new clothes on a freshly showered body, I set off for the laundry room to wash the stuff we’d been wearing for 3 days… (ew). I started the load and went back to hang with Cal for a bit. The wash cycle was 45 minutes so I started back to the laundry room at about the 35 minute mark. Once there, I mindlessly watched the tv until a man came in… he was a big, hulking man (not that I was scared; as a matter of fact, he was very pleasant to chat with). He walked right to my front-loading washer and leaned against it.
I had spent the previous 5 minutes or so watching my laundry go ’round with no issue until………
Wait! first allow me to preface this with some information that is a touch personal. I’m not petite like our doctor, Cal gets his size as much from me as Dan; as a “more-than-petite” woman, my bras don’t come in the cutesy colors with one tiny hook if ya know what I mean… no, these things have construction-grade workings…. small families could use my bra for shelter in a storm…
so Big Burly Guy and I were chatting while he stood in front of my washer and suddenly I noticed my bra smashed against the window of the machine. And I’m not talking, a little part of the strap flashed across on it’s way to the back… I’m talking – the entire cup was pressed against the window as if it were looking to escape.
I know I saw 4 other pieces of laundry in that relative position earlier but when the bra got there… it wasn’t givin’ up the pole position. Just this massive, unmistakeable bra cup pressed up against the glass.
Big Burly Guy had to wonder what was causing the panic-stricken look on my face… I kept shooting nervous glances at the glass, next to his knee, wide-eyed, wondering how in the heck I was gonna ask him to move aside and then try to subtly retrieve that tent of a garment…
and then…
by the grace of God…
his phone rang and he walked out of the room…..
I talked about the upcoming hydration clinic during a football boosters meeting. Practice was over so Cal and a few of his teammates were there; afterwards I asked him if he was embarrassed when I talked about it (he’s a freshman and was horribly embarrassed by the situation in general… worrying that everybody would think he was weak). He shook his head and said, “Nope, we need to talk about it; I don’t want any kid ever going through what I went through… ever.”
Me neither bud… me neither…