Got any ideas.........

[gijanet]

as to what could be going on when a 3 year old describes how she feels as "someone is spanking her heart"? Talked to her PC; without physically seeing her, he said the only thing he could think of was PVCs, so he ordered an EKG, which we just did a couple of hours ago, and a 24 hr. holter, which we are doing now. The EKG tech played mum and said she "only runs the machine, she doesn't read them" when I asked her if it looked "normal." Witch! Anyway, we will most likely see her PC when we turn the holter in tomorrow since it is his day in clinic, but in the meantime, this is driving me nuts. Any input or ideas are welcome. As we have, fortunately, never had to worry about arrythmias thus far, I am totally out of my element here.

Thanks so much.

 

[Karlynn]

Janet, I'm wondering if it is a PVCs as well. They feel like skipped beats and the heart tends to beat a little harder with PVC's, so I could see a 3 year old saying it felt like her heart getting spanked.

 

[ALCapshaw2]

Sounds like you have a pretty bright 3 year old!

Actually, you can probably check for irregular or fast heart beats yourself with a stethascope over her aorta or even by feeling her pulse in either her neck or wrist. PAC's and PVC's sound / feel like a skipped beat. If you listen carefully, it's actually more like a double beat with a longer than normal pause after the second beat.

Premature Atrial Contractions (PAC's) and Premature Ventricular Contractions (PVC's) feel the same and cannot be completely identified without an EKG. They are generally considered to be harmless as long as they resolve fairly quickly (hours or maybe a day or two).

Don't get too irritated by the Echo Tech. She would get her butt chewed royally by the DOC's if she interpreted the results for you.

Try to stay calm while waiting for the Doc to give you the answer(s). PAC's / PVC's are the 'common cold' of cardiology.

If she develops a very fast heart rate (over 120 beats/minute) then you should probably call the cardiologist or his nurse to report that finding. That is usually Atrial Fibrilation and there are medications to calm that down.

'AL'

 

[tobagotwo]

Al's right - both about the PACs/PVCs and the tech getting into trouble.

Waiting is the hardest part. The likelihood is that it's not harmful, and it will end soon (hopefully already has). Although she clammed up on you, the tech would not have let you leave the office if she felt there were any immediate danger.

Meanwhile, try to figure out how an insanely worried parent can avoid passing stress back to her child. Find diversions for yourself and her, to distract you from thinking about it. Play a game, read her books, find an old, funny movie on TV, color together, give her a bath (if she's at an age where she still enjoys that), play house with her stuffed animals or dolls, make popcorn and see if you can throw it in the air and catch it. Interactive, especially you with her, or at least with pieces of paper.

After she goes to bed, try not to pace and think. Watch TV, read, color, make popcorn, do something...

I wish you some peace and sleep tonight,

 

[Harpoon]

I'll echo the thoughts on the tech not wanting to say anythign about the results.

They're not "qualified" to read the things, however they DO know how a normal rhythm is supposed to look and what looks abnormal. They don't know how to sort out complex rhythm problems though so they're not really supposed to say one way or the other, just that the doctor knows best.

Or at least he/she is supposed to.


To some degree, "skipped beats" can be normal. Fatigue causes them, sometimes caffiene or some other stimulants.

What's not normal are patterns or a large number of skipped beats. If there's an arhythmia going on that puts a lot of stress on the heart and needs to be addressed.

It really depends on the individual's circumstances though.


I've got an order for a 24 hour event monitor that I gotta get set up at some point.

Funny thing is, after I mentioned the "abnormally high" number of skipped beats episodes to my cardiologist, they seem to have stopped cold....

Psycho-sematic or just psycho???


One thing I learned is NOT to get too worked up about test results before you know what they are. The EKG (or any other test) could show just about ANYTHING or nothing at all and there's no sense trying to predict because we just naturally go for worst case scenarios....

Try not to worry about test results until after you've gotten them, AND when you have them, be assured that you are a step closer to solving the problem, a step in the right direction. =)


Think positive. The little kids pick up on that a lot, and negativity too.

 

[gijanet]

Thanks again!

Thanks again!

Karlynn, Al, Bob, and Harpy ,

Thank you very much for your replies. I was so hoping that some folks would be in the know as to what PVCs are and what they feel like. I have been doing some research at Heartcenteronline and think I understand what they are, but it didn't really describe what it would feel like from a three year old's perspective.

I've listened to her heart, but it really doesn't seem to sound any more unusual than Katie's heart usually sounds, just more pronounced, if anything, but other than louder, not much different, but then again, I am tone deaf, so who's to say? It is definitely not racing, or anything like that..........dunno.

Katie's surgeon has always told us that Katie was at an increased risk for arrythmia problems due to the nature of her defects and the location of her common AV valve, which was surgically repaired (but, sadly, not holding up). Would PVCs fall under that category or is he talking about something more life-threatening like atrial fibrillation - like I know what that is............. sigh! Don't worry about answering that - I'm just kind of sorting my thoughts and questions out here............

Anyway, thanks again for your insight. It is truly appreciated. I will try not to pace the floors tonight.............in the past, I wouldn't have gotten worked up about something like this; I was always such a positive person................but in the past year - well, now that I think about it, really her entire life - whenever we have gotten surprises pertaining to Katie, they have not turned out to be very good ones. She deserves so much better. And, Bob, I would try the bath thing, but the thought of putting Katie in a ziploc bag to keep her holter monitor and leads dry, just seemed like a bit too much work and not very soothing......heehee! I guess as far as the holter, we just assume normal routine, except for getting wet??? Again, don't worry about answering - I can call the office in the AM.

And thanks for squaring me away on the EKG tech - I promise I will be civil if I see her tomorrow.

Hoping and praying for some good news for a change. Will update when I know something, and, for the final time this go-round, thanks again.

 

[Mary]

Janet,
I'll chime in on the possibility of PVCs. They feel to me like the sensation you get as you start down a steep slope on a rollercoaster; almost a stop in the beat, and then a very hard beat and lunge back. I almost always cough afterwards. Is she coughing?
Unlike everyone else, I know mine are not caused by caffeine. I will occasionally experience them with stress, but anything that causes a fever always brings them on. Fever and dehydration seem to be the main culprits. When my body temperature rises, I throw PVCs.
I want to add that I pray for Katy every night. I started when you first posted to the forum. I have a granddaughter who looks much like Katy, and it hurts my heart everytime I think about what your little girl is going through.
Please give her a kiss and hug for me.
Mary

 

[gijanet]

THanks, Mary!

THanks, Mary!

Katie is not really exhibiting any other symptoms, but I have frequently wondered about the dehydration. She is on a huge dose (for her size) twice a day. I try to keep her hydrated, but since she stays in CHF, she sweats with the slightest exertion............and it has been vacilating (sp?) here between hot and humid and plain hot. I have asked her PC about cutting back on the lasix, but he is really opposed to it. He doesn't want her to get dehydrated, of course, but he feels like the risk of fluid buildup is greater. Anyway, I guess we will find out something here in the next few days.

THank you so much for your insight and prayers. THey are greatly appreciated, as we need all the help we can get.

Take care and God bless........

 

[Sherry]

Hello, Janet,
I've mentioned this before, but I'll say it again, I can't imagine how you are dealing with this situation with your precious Katie. My mom will sometimes relate to me some of her concerns and feelings from when I was a young child (in the late 60s) going through the rheumatic fever and then being hospitalized for all the cardiac workups. It was very hard on her just as I imagine it is for you. Thank goodness for the Internet and being able to stay connected with other patients. One thing I wanted to add to all the other responses is that when I have PVCs on occasion, I can always feel it in my stomach. (Just a minor stomach discomfort) Did she ever mention that? Keep us informed on her condition.

 

[Gnusgal]

Janet, why didn't you mention this in your PMs to me??? I had to go into the forum to find out you had these concerns! That's just not right.

I know that I frequently have PVCs or some other minor little blip in my rhythm. I love Katie's description of her heart being "spanked." That is too cute. For me, it always feels like my heart is holding it's "breath" for a minute, then pumps real hard once, and a bit softer real quickly right after. It sometimes only does it once, and sometimes it repeats for a little while. Does Katie say how long these "spankings" last? Are they only once in awhile? If so, I would definately say it's PVCs and nothing to worry about.

However, I will tell you (and I'm not trying to scare you or anything) that when I was 7 and my card discovered some "skipped beats" he first put me on lanoxin, but when I continued to have them I ended up getting a pacemaker. I'm in no way saying that Katie will be getting a pacemaker, but I wanted to present that as a POSSIBILITY. Just so it doesn't hit you as hard IF it comes up. Now, the pacemaker shouldn't bother Katie at all, and the surgery is quite easy now-a-days. I've had mine so long I don't remember what life was like without it! And each of the replacements have been a breeze.

Please let me know the results of the holter as soon as you can. I've got a personal interest in Katie, after all.

 

[gijanet]

The EKG looked good!

The EKG looked good!

We briefly saw Katie's PC today when we turned in the holter. Katie was satting at 77, which is normal for her, and he said she looks great! He said the EKG looked good, but it would be sometime around the middle of next week before we would get the holter results back. He's not overly concerned and still believes that she could be having an occasional PVC now and then, which may or may not show up on the holter - I told him that she had not complained one time of her heart being spanked the entire time she was wearing it - 'course she wasn't quite as active as she would have been without it, so dunno! Guess we will know something next week.

Thank you again so much for your concern, insight, and prayers. THey are truly appreciated. Have a great Fourth of July weekend!

A couple of addendums for Sherry and Niki:

Sherry,

Interestingly enough, when Katie first started complaining, she said that her tummy hurt. It wasn't until her third or fourth complaint that I started grilling her and asking her to show me where it hurt; that is when she started slapping her chest, saying that someone was spanking her heart, so.........who knows? I think in her three-year-old mind she just knows that something is not quite right at times..............

And my heart goes out to your mother. We only had a small taste of that isolation, and it was more than enough to last a lifetime. Katie was not diagnosed in utero (I'm still amazed that they didn't pick up that her heart was on the right - I was a high risk pregnancy due to my age and had numerous sonograms!), and she was hospitalized for eight weeks after her birth. I remember all too well those long, lonely days in the hospital, thinking that we were the only ones going through this. It wasn't until we finally got home from the hospital that I was able to get online and find out that we were not alone - that there were others who were experiencing the same trials and tribulations we were. I think I would have completely lost my mind without that help and support from others. I sure hope you gave your dear mother a tremendous Mother's Day present, although I am quite sure that she would say that your thriving and surviving all these years is present enough!

Thanks again.

Niki, Sorry, but I didn't want to take you away from your schoolwork. And it slipped my mind - there is so little of it left - that you were the Pacemaker Queen. We have, unfortunately, already been warned by Katie's surgeon that a pacemaker is most likely in her future (Katie's, not the surgeon's ) somewhere down the road; I would just rather not take that road today or tomorrow, for that matter. We have enough to sweat with the fontan and valve re-repair or replacement coming up sometime this year...........

as far as how long the spankings last..........no, I haven't asked her. She just complained about it intermittently the last week and a half. Sometimes she would also complain about her head hurting; usually, she would just want to be held until she fell asleep. When she would wake up, I would ask her how she was feeling; she would answer her typical, "Good. Fine." So, I would leave it at that. Guess I should have paid closer attention, but I really don't think they were prolonged episodes...............so here's hoping and praying that these were just some minor PVC episodes and nothing more.

Will let you know how that holter turns out. And thank you so much for your concern and insight. Now get back to work..........

Take care and God bless...................

 

[gijanet]

Good news for once!!!!

Good news for once!!!!

Well, today was a really good day for us - really rare! (Damn!
Should have gone and bought lottery tickets! ) First, we got the
results back from Katie's holter monitor from last week........drum
roll here.........and it looked great!!!! Dr. W. said that she
might still be throwing a few PVCs that weren't captured in that 24
hour period, but, for now, it is nothing to worry about. Just to be
on the lookout for more episodes of her "heart being spanked," and
only get concerned if they become more frequent or prolonged. Gee.........I think some of you mentioned that! (Now if that darn valve will just do a 180, we would really be doing great!)

And today (another drum roll needed here)........Miss K used the
potty all day long today - yes, actually used it for a potty - peed
and pooped in it even, with only one accident in her Dora panties,
which she insisted on wearing. For those of you who don't know
Katie's history with her potty, this is a major accomplishment. She
has used it to store everything - grapes, pine cones, I think even
tomatoes one time, everything, but poop and pee. I was just about
on the verge of potting a plant in it when Katie decides to throw me
for a loop and catch me completely off-guard. 'Course the potty is
in the living room in front of the TV, so I guess we will have to
work on location later, and after she had her accident, she decided
that it would be better to wear nothing at all, so she ran around
butt-naked most of the day - yes! completely
naked...............sigh! But it's a start! Hope this wasn't a one-
time thing..............guess we will see tomorrow. I put her back
in a diaper for tonight - figured that was a bit too
soon.........why push my luck?

Anyway, thank you all so much for your support through all of this. Now I guess we just play the waiting game until the next surgery - hopefully, not for a few more months..................sigh!

THanks again. Take care and God bless................

 

[surfsparky]

Hi Janet,
Congratulations with the good news of the holter monitor and EKG, and not to mention success of the potty training! With my son Noah, I had to bribe him with a chocolate frog (called Freddos over here), to do poops on the toilet. Peeing was no big deal, but pooping was a huge challenge!
I also would like to say that you are an inspiration. The way you are coping with all that is happening with Katie, is incredible. You're a great mum.
Praying for extra measures of God's strength when the times get tough (and miracles for Katie),
love Yolanda

 

[Mary]

Hey Janet!
I suffered through five, yes 5, potty trainings! I do have stories, but Katie's using it for storage of food items, is a first!
Having 4 boys they had a tendency to use anything they found interesting as a receptacle for their urine output. Potted plants, registers, drainage holes both in the laundry room and garage, and aquariums (poor fish)!
The good news came with our fifth potty trainee. Although he was resistant to "getting with the program", from the first time he used it, he NEVER wet a diaper at NIGHTTIME again. He would have accidents during the day, but never at night. NEVER!

Maybe Katie will do the same.

Our granddaughter who is 19 months is trying the process out, so it looks like I'll soon have more stories. I hope Hailey doesn't come up with anything as exceptional as Katie's saga with her potty chair, but I'm prepared!
Love,
Mary

 

[Gnusgal]

Janet, this is wonderful news! I'm so happy to hear it. Katie remains in my prayers (and you too, of course!). You're such a fantastic mom. I think God picks you out esspecially for kids like "us" (my mom's pretty fantastic herself). I told my mom the other day that it's so much easier being the patient than the one waiting. At least I get to sleep through the tough stuff! You've got the REALLY hard job. Keep up the great work.

 

[gijanet]

Thank you for sharing my good news!

Thank you for sharing my good news!

Thank you all for sharing our good news.........it was so nice for a change to get good news!

And awwwwww, shucks! Yolanda and Niki, you make me blush!

And Mary, five times??? No thank you. I was spoiled with Trip as my childcare provider trained him for me. As for Katie, well, wish me luck. I know one thing. I am going to have to try and move her second lasix dose to an earlier time. 9 PM is not conducive to staying dry at night. Thanks for the well wishes. I will post our latest potty-training saga on small talk so as not to "soil" the heart thread list.

Thanks again, y'all. Take care and God bless..............