Posts Tagged ‘school’

Back to school CHD Letter

August 9, 2010

Sending your Cardiac Kid back to school, or to school for the first time? Worried about what could happen if there were to be a medical emergency? I would think every Heart Parent would be concerned. Thankfully, the group Hypoplastic Right Hearts has a template for a letter you can send to your child’s teacher to help make sure everyone is on the same page. The letter also gives the teacher more information concerning the child’s heart defect and even includes a few tips about trouble signs to look for.

Feel free to rewrite this letter to fit your and your child’s needs!

Dear Mr./Mrs./Miss___________,
I wanted to first say hello. _______(Child’s name) is excited to be in ____ grade and will
hopefully be a perfect addition to your student body.
I wanted to let you know a little about _________(child’s name). I will send this to
___________(school nurse, gym teacher, and any other relevant staff) as well, so I
apologize if it was passed on but as you will see it is rather important that everyone
dealing with __________(child’s name) is aware of his/her special circumstances.
_________(Child’s name) was born with a Congenital Heart Defect called
__________________________________________________(give child’s diagnosis).
I know, it’s a lot to read, and basically it means, s/he was born missing the right
ventricle, and has “half a heart.” _________(child’s name) has had to have ___(number
of surgeries) open-heart surgeries to reconstruct the pumping function so it pumps to
his/her entire body.
We have been enjoying the time since the last surgery and do not expect any procedures
in the near future (or state if there is a plan for surgeries/procedures during the school
year), but with a condition this serious the future is never crystal clear. He will see his
cardiologist in _________(state upcoming appointments if any) and if anything is turned
up, we will of course let you know if it will affect his school time.
Just to let you know some tidbits about him and some warning signs and things to watch
for. ___________(Child’s name) oxygen levels are slightly lower than that of other kids.
The weather can affect heat/cold regulation so there needs to be the ability to rest when
s/he needs to and hydrate as much as possible during physical activity, this is very
important. I will make sure s/he is appropriately dressed for the weather.
Physically s/he is to be treated as normal as possible. S/He is not allowed hard contact
sports or any kicking, hitting, direct ball contact etc in the chest. Running is fine and most
physical activity is ok as long as s/he can rest if s/he needs it or get a drink of water.
Things to watch for: Nostrils flaring/rapid irregular breathing. Bloodshot eyes or rolling
of the eyes, extreme sweating, redness of the face and body that doesn’t go away with
shade/rest, blueness of the lips or hands or vomiting. Any signs of an adult heart attack,
the dizziness, fainting, pain in the arms, etc. also would of course be signs of emergency.
____________(Child’s name) does have to take ____(list medication), which I give at
home. (Also list any meds that the school will have to administer). I would like to let you
know that aspirin (or Coumadin) increases bleeding and bruising risk.
As I mentioned, I will have spoken with all the staff that deal with ________(Child’s
name), and obviously if s/he is in distress of any kind, 911 should be called before me,
but if s/he’s just “normal” sick, I can be called.
Please forgive me if this comes across as a lot of information. We wanted to provide it so
everyone is on the same page in regards to __________(Child’s name) care. There really
should be minimal impact the heart defect has on day to day life at school, but we felt
very strongly that everyone who is in a caretaking role be made aware of this issue.
We are all looking forward to a fun school year. Thank you so much for taking the time
to read this, and if there are any questions you have, I would be more than happy to
answer them for you. Thank you again.

Home 555-5555
Mom Cell 555-5556
Dad Cell 555-5557

Once a Heart Mom…

April 8, 2010

Once a Heart Mom, always a Heart Mom.

Even after your Cardiac Kid survives that first surgery (or surgeries), stabilizes, and seems to be doing well, the Heart Mom gene never turns off. It goes into “Standby Mode” – not completely deactivated, but just below the surface. Your senses will always be heightened, always aware of any change in your child’s condition.

The doctors at Johns Hopkins Hospital had told my parents that if I had any more problems caused by my heart, they would most likely happen in about ten years. Their prediction was almost perfect – I stated having trouble 10 years and one week after my first surgery.

I was 11 years old and in the 5th grade at school, on a cold February day. I was sitting with my back to the wall of the school (I had learned that the wall faced the sun so no matter the temperature, it would be warm!) drawing with my best friend. Neither one of us could draw a straight line – I still can’t – but we were certainly trying!

My stomach had been doing flip-flops all morning. I didn’t feel bad, other than my stomach. But something was really giving it a fit – finally it came to the point that I turned my head, leaned over and puked.

It was all blood.

My friend said that I might need to go to the office (Yeah! I think so, too!) so I did. They called the local Rescue Squad, then called my mom.

The volunteer Rescue Squad building was only 2 miles away, but the members were spread out all over my hometown. They were pretty quick; just a year or two earlier they had won an award for being the best small Rescue Squad unit in the state, but they were still all volunteer. Once you dialed the emergency number – and this was 1977, before 9-1-1 was in use – whomever was on duty had to take the information and then press the big red button on the radio. That caused all the beepers carried by Rescue Squad members to go off. They would then leave their jobs and hurry to the Rescue Squad building, get the ambulance, and speed off. It was usually ten to fifteen minutes from the time you placed the call until you first heard the ambulance siren.

My mom got the call at work, twenty-five miles away. Suddenly her Heart Mom gene flipped to ON and she barely remembers what happened next.

What happened was she ran to the car – an older AMC Ambassador – and put her foot on the floor. Pedal to the metal with the engine screaming, the best cars and drivers that NASCAR has to offer could not have beat momma that day. She drove that AMC Ambassador twenty five miles in a little more than twenty minutes, arriving just behind the ambulance. The ambulance parked in the parking spot nearest the door, but momma skidded to a stop with two wheels on the sidewalk!

Daddy hadn’t arrived yet when I left in the ambulance, but momma was going with me and there was no question about it. She jumped into the ambulance as  they loaded me in, and soon we were moving. The last view I had before they shut the doors was of our car, still sitting there with two wheels on the sidewalk.

How are they going to load the buses? When you are 11 years old these questions are important.

That ambulance ride ended at our community hospital, but my journey would continue to a larger hospital and from there to the University of Alabama at Birmingham for my second heart operation. Mom and Dad were there every step of the way. I’m doing well now, and Momma’s Heart Mom instincts usually don’t come into play. I can still set them off – just let me forget to set my alarm clock and not get up at my usual time!

Once you are a Heart Mom, you’ll always be a Heart Mom. No matter how old your Cardiac Kid (or Heart Warrior) is!

Like a Rock

January 30, 2010

I was eighteen
Didn’t have a care
Working for peanuts
Not a dime to spare
But I was lean and
Solid everywhere
Like a rock

Like A Rock, Bob Seger

I think readers of this blog will agree with me when I say that my life has been a roller coaster. Not the ups and the downs, everyone has those, but it has certainly been a wild ride. In and out of hospitals, making it through three heart operations, having a cyst taken out of my brain, Endocarditis, a stroke, getting (and replacing) a pacemaker…a lot more than the average guy. I’m also a part of medical history: I was only the fifth Glenn shunt successfully done at Johns Hopkins, and the first to be physically active.

I’ve been to Washington DC, Durham, North Carolina, and Boulder, Colorado to support Congenital Heart Defect (CHD) survivors; I’ll be in Florida in a few weeks and then back to DC. In late July I’m planning to be at Hearts Re-United 2010, a CHD conference in Houston, Texas sponsored by Hypoplastic Right Hearts. And hopefully I’ll be able to do more advocacy in the future.

Thankfully, I only have a few regrets, but I was reminded of a major error this past week. The Alumni magazine of my college interviewed me for a series of profiles that they are writing (they publish once a quarter, so I have no idea if/when it will be published) and they asked me when I got involved in advocating for other Survivors of Heart Defects. And I hate to say that I never did a thing for CHD while I was in college.

The problem was that I was too healthy. My second heart operation was in 1977, and from then until after I graduated college in 1988, I was like a rock. I only had one problem with my heart that I can recall (and I did that to myself). I went into the hospital overnight for a Catherization but that was after I decided to have Surgery Number Three, so that incident wasn’t a medical crisis. I took an average of one pill a day, not the bucket of medication that I take now. I rarely thought about my heart, and because of that, I never did anything to support others living with Congenital Heart Defects.

And that’s a crying shame. We only had about 2,000 resident students, so becoming a campus leader would not have been difficult. And even if I decided not to do anything on campus, there was a pretty large regional hospital located right across the street. I could have easily offered to assist them in some way.

I’d love a chance to go back and do something regarding CHD at my college. A lot of the students will be married in a few years, and expecting children not long after that – they’re just the group to you want to try to reach.

And if the opportunity comes again, I won’t let it slip by.