My latest theory...

My latest theory is that her heart is doing so well that she needs to come down on some of her meds.

Now that's a good theory! :)

If you have any theories I'd love to hear them....

We have an appointment for next Tuesday. She'll have a full work up, complete with an echo. This whole picking her up from school due to dizziness and fatigue is really getting old. I'm going to start giving her a shot of espresso in the morning. :p

I'll update after her appointment next week.

Crazziness

I'm not going crazy, right?

1/18/11 This is the day the PM was turned back on to VDD mode to see if pain stops (atrial lead was "shut off." It senses but does not pace.

8pm she choked on her food

9pm Complains pacemaker in belly feels weird. "Like someone is scribbling back and forth"

1/19/11

School nurse emailed me the following- Skyler came in @ 10:45 to report she had felt several quick sharp pains while taking a test sitting at her desk. She pointed to an area 3 cm to the right distal end of her sternal incision. (PM site) It was slightly tender to palpation. The area that had hurt was between her ribs and my fingers- so it was not deep. Her pulse was nice and regular at 80, and the pain did not increase with movement or breathing.

1/20/2011

4pm complained of left neck pain. Described it as "someone stabbing me"

1/20/11

7:30pm complained of feeling dizzy. When asked to describe the feeling she said, "like my feet aren't on the ground"

Seems more easily fatigued than last week, but it is not interfering with her daily activities. She just needs more time to recoup after being active. Also received an email from her teacher stating the same.

She has not had any left chest pain.

1/21/11

Came in from sledding at 1:00 and complained of feeling dizzy "like feeling wiggly"

1/24

nurse emailed me about sky being dizzy;

Sky came to me @ 11: 40 am stating she felt dizzy and unsteady when she was eating lunch. No Chest pain. Her HR was 72, slightly irregular. Her BP was 100/60 sitting, standing it was 96/58, her HR went up a bit to 82. She looks good, it resolved quickly and I did a discreet neuro exam and did not see anything unusual. I have her eating some saltines (she said her sandwich didn't taste good) and also gave her some juice. Let me know if there is anything else you would like me to do/look for. Its indoor recess today.

1/25

nurse emailed me;

She has been with me for 20 mins, she had an episode of dizziness while seated, then came and saw me. HR 82 and regular. then her neck began to hurt. BP is 102/60, no change with standing. Started @ 12:45 PM. Her neck hurts, she gives it a 10. It is not going away and we have done rest and juice. Let me know how to proceed from here.

(I picked her up from school)

1/27

choked while drinking juice in the am. Complained of being dizzy after dinner.

1/28

Email from school nurse

Sky is having some dizzy episodes. she had one at lunch but went to indoor recess as it was mild, but during indoor recess she felt very tired and dizzy and came to see me (11:55 am) HR was 84, slightly irregular, slightly pale. BP 98/68, no change with standing, her HR did go up to 100. She did experience some discomfort in upper chest wall bilaterally at that time. That has resolved.She wants to go back to class, I walked her down and she will come back or they will call me if she does not feel well again. She was more animated with the pink back in her cheeks when I brought her back.

I am definitely NOT a crazy psycho mom.... even though I often feel that way.

Breaking Things Down

Everyone keeps asking me how Skyler is doing, and while she's doing well, there are still some issues. So I am going to try to break this down.

1. Sky was having chest pain when all her leads were turned on. The doctors said it wasn't the pacemaker but decided to turn it off (per my request) to shut me up.

2. The pain stopped when it was off.

3. I figured out that the RA lead had to be the problem. The lead was turned off (leaving just the LV lead on) and the pain never returned.

4. She now has episodes of dizziness and neck pain.

5. I suggested to the doctors that it's pacemaker syndrome and that the RA lead needs to be replaced.

6. Doctors have yet responded to my email regarding PM syndrome. They brushed it off when I brought it up in the clinic at her last appointment.

7. I know that the RA and RV leads need to be replaced.

So what on earth is PM syndrome?

Ventricular pacing has been noted to sacrifice the atrial contribution to ventricular output; in some instances, atrial contraction occurs against closed atrioventricular (AV) valves, producing reverse blood flow and nonphysiologic pressure waves.

Basically, since Sky's atrial leads are not working so is being paced by just her ventricle lead. When her atrial contracts against closed valves she gets dizzy. It doesn't happen with each beat. It happens just a couple times a day. A couple times too many if you ask me!

What are the symptoms?

• Neurologic - Dizziness, near syncope, and confusion
• Heart failure - Dyspnea, orthopnea, paroxysmal nocturnal dyspnea, and edema
• Hypotension - Apprehension, mental status change, diaphoresis, and signs of orthostasis and shock
• Low cardiac output - Fatigue, weakness, dyspnea on exertion, lethargy, and lightheadedness
• Hemodynamic - Pulsation in the neck and abdomen, choking sensation, jaw pain, right upper quadrant (RUQ) pain, chest colds, headache
• Arrhythmias - Palpitations
• Rate related - Chest fullness or pain

The symptoms in bold are what Sky deals with.

So what next? Sky will continue to be dizzy and after some time I assume the doctors will agree with me and the leads will be fixed.

Now I am not suggesting that the doctors are incompetent. They just don't want to plan an unnecessary surgery on an 8 year old. They need to be sure that something is really going on. I think a few weeks of me complaining about Sky will be enough. They need to "present" sky's case to a team before they can proceed. They can't walk in and just say, "Mom thinks it's PM syndrome because the child is dizzy." I get that... but if they review her file, my emails, the letters from her school nurse, and Sky's complaints in her own words, I think they would have enough information to proceed. That is the part that frustrates me most. I know she's going to need another surgery so let's just fix this already! It won't be a major surgery this time. It would be done transvenously in the cath lab. In and out and home the next day.

Ahhhh with my luck they'll plan it on my graduation day. Yup, just my luck!

My little pig with a plate full of ribs!

Science fun!

Latest chest x-ray

I think I solved it!

Even if I am wrong, I rock!

So there I was, laying in bed, thinking about Sky's pacemaker and it dawned on me... we have it all wrong! See, Sky was having chest pain prior to the surgery, in fact, it is what landed us in the hospital in the first place. We went to Children's hospital and just happened to find out the LV lead was not working. We assumed that was the source of pain (from an arrhythmia). We turned off the pacer and all pains went away. During the surgery we fixed a non-functioning LV lead, but that was never the source of the pain! The RA lead, whether from pacing, sensing, or just it's position, is and always was, the culprit. This is not a new pain, it's just a continuation of the Pre-surgical pain! Eureka!

Sky's atrial lead has an elevated impedance (total opposition to current flow blah blah) of over 2500 ohms which is suggestive of a fractured lead or loose screw (those are the top 2 anyway). I can't help but wonder if something was overlooked?

The plan was to go back to the doctors on Tue and have him turn one lead on at a time to find out which one was causing pain. I'm sure they will stick to that plan just to make sure it is the RA lead. I'm fine with that.

And yes, I emailed the doctors just now to tell them my thoughts... I did it nicely even. I also told them, "I know I am a pain in the ass but I make up for it by being an awesome mommy!"

:)

The Latest and Greatest

Sky pretending to be an Electrophysiologist. Her dolls pacemaker is being tested.

Skyler enjoying the snow. Two thumbs up for a great day!

I hope I am not cursing myself by updating such great news prematurely. Fingers crossed I am not. Yesterday was such an emotional day for me. We had a scheduled appointment with the cardiologist and electrophysiologist at Children's Hospital to figure out what was going on with Sky. The results from her holter monitor didn't offer any clues. It showed her heart and pacemaker to be working nicely together. There was nothing abnormal in the results. Her Xray and ekg were also normal. They kept telling me they think it's just post-op pain and we should give it a little longer. I explained my reasons for not thinking that was the cause... she is suddenly choking on food, has pains only when sitting up, only while at rest, never when up and running around, she complains the muscle in her neck suddenly hurting, her pacer area will suddenly burn, and her chest will feel like it's squeezing followed by an ache. Again they said it could be post-op crap.

I asked them if it's possible the pacemaker is pacing the surrounding muscles (including the diaphragm, which explains the sudden choking). They didn't think it was. They were right in assuming as much. See, they have a way to test that. They change the settings on the pacemaker for just a minute and increase the output. If she had pain then they would know the surrounding muscles were being paced. She had no pain. BUT then Dr. ***** said something that made me question the results. She said the muscles would contract during the test... then she looked away in thought and said, " unless it has to do with the position she is in..."

Ahhhhh the position! Did I mention it's only when she is sitting? So I did what every good mother would do... I got all teary eyed and asked, "why can't we just turn the PM off for the day? If she has pain then I will know, without a doubt, that it's not the PM. I just don't think I am asking for much!" And so they turned it off. Happily. I mean they were great about it. I literally said to Dr. *******, "I am sorry I am acting crazy. I just need to know for sure before I can let it go. Please just humor me with this." Know what he said? He told me it's not humorous at all and that I am not being crazy. He agreed with me and off it went. So guess what?

For the first time since Dec 6th Sky has not complained of pain. She went from having at least 10 episodes of chest pain a day to none in the last 24 hours.

I am still not convinced yet. The big test will be tomorrow when she goes to school, but man, I am happy.

Hope

Sky only complained of pain once today and then a few hours later said she had heartburn. Maybe the morning pain was unrelated to the pain she had been experiencing? I don't know. The big test will come Monday when she returns to school. Fingers crossed......

Just a quickie

We saw her electrophysiologist yesterday so he could lower the output on one of the leads. He really feels strongly that the chest pain isn't being caused from the pacemaker. I have no idea what I think anymore. I thought lowering it worked. Hours went by before she complained pain, but around 5pm she started having them again. She said they didn't hurt as bad and rated them a 3/10 on the pain scale. I'm not giving up hope. I started her on Motrin in case it's muscle pain, prilosec in case it's reflux, Iron supplements since her hct is low and she is seeing an adjustment counselor in school.

The worst part is I have to act like it's no big deal. I try not to even bring it up at home. I don't want the poor kid just thinking about her heart function all day long. She tells me when she has pain and I just have to reassure her that it's not dangerous and her heart is working perfectly. I cannot stand when people call the house asking for details about Sky. I have this blog for a reason. I refuse to have a conversation explaining what's going on while Sky is home.

Holter results should be back Tue. We also have a doctor appointment with Dr. ***** that day, but I am thinking about canceling it. I'm really getting sick of paying hundreds of dollars just so they can listen to her and tell me they don't know what's going on.

Reaching my breaking point

What a week it's been. Considering I am writing this at 1am I think it's safe to assume things aren't great. They are not terrible either. Skyler continues to have chest pains, a tightening in her abdomen and complains of "weird" breathing. Some days the pain is in her stomach and other days her neck, but everyday there is pain in her chest. We have been to the doctors a few times and each time I am reassured that her heart is fine. They have done and echo, ekg, chest xray, blood work and everything checks out ok. Her pacemaker is working well, in fact, the one lead that wasn't working (capturing) is now functioning as it should. So why on earth is Skyler having pain?

Tomorrow a nurse will come to the house and put a holter monitor on her. This way the Dr's can see 24 hours of electrical heart activity. I don't suspect they will see anything out of the ordinary, but who knows at this point.

I think it's her pacemaker. Seems pretty obvious... at least I thought it did. It was the first thing I questioned after her surgery, when this pain first started. I informed the doctors and at first they politely listened me. They brought sky in and listened to her, ran some tests and chalked it all up to post surgical pain. I was 90 percent sure that was a bunch of bullshit, but decided to wait a few more days so I didn't look like a 90 percent fool. Want to know what I learned from that? Moms are NEVER fools! (I suppose some are, but I am not... usually)

So why am I pissed? Sky has been very vocal about what she is feeling. "It's a squeezing in my heart and then just an ache." "Sometimes if feels funny when I breath, like its rough" "My neck feels weird" "It starts at my ear and goes to my chest..." I'm pretty sure I am not in medical school, I have no desire to be a doctor, nor do you I'm guessing, but I think we can all agree that something is going on. Her heart function looks great and ekg is normal. That leaves one thing, the pacemaker. Ok, so maybe it doesn't leave just one thing, I'm sure there is plenty of other things it could be, but google told me it's most likely the pacemaker. :)

I emailed her doctor tonight to tell her that sky came home from school because she was having chest pain and was anxious. The doctor then emails sky's electrophysiologist so they can decide what to do. The cardiologist was questioning whether to admit sky to the hospital for observation. The EP Dr then responds to that email saying, "If she's having chest wall stimulation, it can be treated in the office by adjusting the lead output" Hmmmm chest wall stimulation you say???? Hey that wouldn't be the same thing I questioned 4 weeks ago, would it? Oh, you mean chest wall stimulation would cause pain? Wow! and I bet diaphragmatic pacing would make her diaphragm contract and cause it to feel weird when she breathes! So what you are saying, without saying it, (always the way, huh?) is that chances are this could have been treated weeks ago? Fuck, I think I just graduated med school and didn't even realize it. (If only I could earn the big bucks for my pseudo Med School diploma)

Now it may seem that I am picking on the doctors or that I am ungrateful for the care they provide to Sky, that is not the case. I think they are amazing and I owe my child's life to them! I'm just mad because it has taken them 4 weeks to entertain the chest wall stimulation theory I had at the first appointment. Perhaps it's because I didn't say "Chest wall stimulation", but rather "OMG do you think the pacer could be shocking her muscles and thats the tight feeling???" But come on, we all know pediatric doctors have to take a class in Crazymomenese. In fact, I'm pretty sure they have to pass with an A to graduate. I realize doctors have to rule other things out... that's what makes them doctors. They are taught to breakdown the problem into smaller parts by ruling other things out, starting with the most harmful first I would suspect. But they could have done a full work up weeks ago and changed the settings then. Do they not realize the harm they caused by allowing this to continue? Doctors treat the disease, nurses treat the patient, and mom's must do both.... and then some. I don't think they have any idea of what this has done to my child emotionally. The fear that accompanies the pain, her worrying about dying, the schoolwork she has missed (yes, this bothers me). It's just one huge mess right now.

So it looks like tomorrow she'll get the holter monitor and we'll head to Children's hospital to have her output lowered and then cross our fingers.

I could be wrong (it's just a pseudo diploma remember!) and it may not be the pacer.... that isn't the point though. They stretched this out for 4 weeks when it could have been done in a day (a very long day, but one appointment). And if changing the settings doesn't work then it will now be stretched even longer!

Ugh, post surgical pain my ass... my kid was dancing the week after her surgery, because my kid rocks!

Did I just do that?

Today is Sky's first full day back at school. I thought I'd be happier about it, but instead I am finding myself being ridiculously tortured with each passing minute. I have also realized that, I am indeed, going insane.... more on that in a bit.

So let me backtrack a bit. Sky has been doing well. We had a few scares, a stomach bug, and a trip back to the hospital but everything is fine now. She was having some chest pains and I took her to Children's Hospital. Everything checked out perfect and her lead (one that was not working fully) is now working. The electrophysiologist chalked it up to "maybe a little air got into the lead during surgery and it's now resolved" Let's just leave it at that. It's just easier.
She goes back to her cardiologist Jan 11th. She'll get the royal work up then. It will be interesting to see what the echo has to show. I'm not too worried about it. She's doing great and if there is an issue, we'll worry then.

So life goes on. I finished up my fifth semester (nursing program) and passed with an A. I have no idea how I managed that with everything that was going on, but I am thrilled I did. Fortunately, I have the next three weeks off. I also went back to work after being on a four week leave. It seriously felt like my first day on the job! I'm sure it won't take long for me to settle back into my routine.

As far as me going crazy... I'm sure that's a big shock to most of you ha! I think the school nurse and I exchanged like 20 emails today (maybe it just felt like that many) because I was so concerned about Sky. Then, when I was making my lunch this afternoon, I suddenly panicked because I didn't send Sky to school with lunch money. I had visions of her sitting in the cafeteria, too shy to tell a teacher she didn't have lunch, starving to death! I quickly called the school and had them check on her.... then I remembered that I did send her with money. She had lunch today. yay. I am a nutcase. It was then I realized that I need to calm the... heck... down and go find something productive to do! I took a nap. Yup... life is getting back to normal.