Surgery... again.

Just a quick update tonight.

Skyler continues to be symptom free. We have an appointment March 8th and we will be discussing Sky's next surgery. Yay, we are all finally on the same page. She'll be having her pacemaker and/or her leads replaced. Though I am not positive, her Doctor mentioned putting the leads in transvenously. (down a vein in her neck)

So how did all this happen? Well, long story short, I called the pacemaker company and told them what was going on. Then I emailed her doctor. He was not very happy I called the company. I'll leave it at that since this is a public blog.... whatever, it got results.

Now suddenly everyone is convinced something is going on with her leads and she'll be having them replaced. I don't have any details yet but I'll post them as soon as I do.

I'm looking forward to putting all this behind me!

Pictures

A few pictures..

So Far...

So good! Sky has not had any chest pain, dizziness, breathing problems, neck pain, choking, or color changes. That's not to say she won't though. At this point I have no idea what to think or expect.... but so far so good. Fingers crossed.

If it is proven that her PM was causing all these problems I'll have no choice but to "break up" with her EP doctor. That really bothers me because Sky just loves him! He is wonderful but he didn't take anything I said seriously. Instead of telling me he didn't think it was the PM he should have taken some time to prove me wrong, explain his reasoning, and open his mind to the potential possibility it was a PM issue. If it's proven it isn't the PM that's ok too. I don't care if I am right or not. This is not a diagnosis competition, this is my child's life. I just need to figure out what's going on. Either it's the PM or she suffered some neurological damage from the surgery.

Prove me right, prove me wrong, either way Sky wins.

Finally!!

I'll start at the beginning.

Yesterday, around 3:40, while I was at work, I looked at my cell phone and saw I had a voice mail from Skyler's super fabulous school nurse. She said sky was having trouble breathing and that she cannot put sky on the school bus and I needed to call her immediately. When I called her back all I heard was, "Distress, emt's and Rick." That was all my head could register. I ran out of work thinking the worst. I called Rick to find out what was happening and he told me he was at the school with Sky. Her episode had passed and it was decided we'd take her to the ER.

We got to the ER at Children's and they were all ready for Sky. I mean it was beautiful. We got right into a room and cardiologists came right in. Not only that, but they knew exactly who she was. They were the doctors that cared for her during her pacemaker surgery. So they took a quick history but amazingly they knew most of it. One Doc said, "This is obviously the pacemaker, you've given us a consistent story of symptoms." Oh thank god! Finally, someone who actually believes us!

They did an ekg and chest Xray and everything looked fine. Then someone from the electrophysiology came to speak with us. She was a little unconvinced it was due to the pacer. Sky told her all the symptoms she has been experiencing since her PM surgery. She was still unconvinced (she didn't say that, but I could tell from her facial expressions). She explained how the pacemaker and wires were no where near her esophagus so choking could not be related. Ugh, I sensed another battle. Then she decided to test the left lead. She turned up the voltage and Sky immediately had a reaction. She put her hands around her throat, made a face, and said, "ugh, my throat. I can feel it in my throat." then she started coughing. The pacemaker was shut right off.

Finally! Something that linked the pacer to one of her symptoms! One of her "Broad, clearly non cardiac" symptoms (That quoted material is for Eileen, she'll understand what I mean ;) ) I told the EP doctor to make sure that is documented in her chart. Actually, what I said was, "You will document that, right? And let Dr. ****** know? Because he is having a hard time accepting this is all from her pacemaker." She said that she'd write it in her chart, put a note right on the front page AND let that Dr know. Finally!

So the pacemaker is off but Skyler doesn't know. I didn't want to tell her because I don't want the Doc to suggested it was all in her head.... That the symptoms stopped because Sky knew it was off. You get the idea.

So what happens now? I have no freaking idea. It will stay off for one month and I have no idea what they will do after. What I do know is that I will fight for a new pacemaker and leads!

Thinking out loud

-When the PM was off for a week (1/11 to 1/17) Sky had no pain or dizziness.

-In DDD mode she had chest pain

-In VDD mode with the LV lead voltage set at 5 she had dizzy spells, turned gray, neck pain, phrenic nerve capture, fatigue after episodes, choking on food/drink

-In VDD mode with the LV lead voltage set at 1.5 she has pin point chest pain, turns gray, fatigue after episodes, choking on food/drink (though much less than when the voltage was set at 5)

Maybe we should turn that atrial lead back on and see if the "episodes" stop. Seems to me she is going to have chest pain regardless of leads.

I wish they'd just take it all out and start over!

Bummer

Oh well, the symptoms persist even with the change in the LV lead voltage. Her diaphragm isn't pacing anymore (except when she inhales deeply, but it's not dangerous or anything) but she still has some chest pain, dizzy spells, and tingling in her legs and arms. I am out of guesses. I'm wondering if we should now see a neurologist? Maybe the lead is on the phrenic nerve causing all of this, maybe there was some nerve damage (obviously not life threatening since she is so well between spells) from the surgery or maybe it's something totally unrelated... though I highly doubt the last part.

I sent an email out to the doctor letting him know that symptoms continue. I suggested he present Skyler's case to some of his colleagues, including a neurologist. I've yet to hear back.

Sky is doing well though. I think most of you saw the Facebook video of her dancing. Even when she has these "episodes" she is OK. She just complains if the symptoms until they pass and off she goes back to playing. It's hard to figure out what's going on since symptoms are so intermittent. There was talk about admitting her to the hospital a while back but the cardiac floor is riddled with kids with RSV. The Dr's are worried she'd get it, too.

I am bummed out, but I knew this was going to happen. Hopefully they'll come up with a better plan now that they have seen the diaphragm being paced.

Sky is a mystery, no doubt. Her doctors really are working with me, though it doesn't always seem like it when I explain things in this blog. I have the absolute best of the best and I know they will figure this out. The one good thing is that Sky's heart is doing awesome, so let's not forget that.

I'll update once I know more, but that's about all there is for now. Thanks for all the well wishes!

Todays news

Today I brought Skyler to Children's Hospital to have the voltage on her left lead adjusted. The electrophysiologist changed it from 5 to 1.5 in hopes to stop the intermittent diaphragmatic pacing. I'm not to sure if this is the root cause of all her ongoing issues or if it's just another symptom.... or a fluke. The Dr. has no idea either. He showed me her x-rays and pointed out the left lead and how he thinks it must be close to the nerve. He thinks it's being paced directly. Meaning, the lead is hitting or is too close to the nerve rather than the diaphragm being stimulated from the heart itself. (the bottom of the heart rests on the diaphragm.)

He did do a lead test on her though. He turned the voltage up very high to see if he could get her stomach to "bump up and down." But it didn't. Her Dr said, "I don't understand it. I know it happens. I saw it myself (skys video) so I don't understand why it's not doing it when I test the lead." My child is a mystery. Now, knowing the phrenic nerve runs from the diaphragm to the neck area I thought for sure that was what caused her intermittent neck pain, but he didn't think so. He didn't give me a flat out no, but he scrunched up his nose and said he didn't think so. Only time will tell.

I really hope that this fixes all her problems! I also hope that the docs really start listening to me now. We have proof something is going on and it's the first thing I suggested back in Dec when all this shit started happening. Had they just lowered it then, rather than testing it and dismissing me, we wouldn't be dealing with this. Again, I truly understand that they are doing everything that's right... I just wish they would think a little outside the box. Not everything is classic textbook, especially children.

Let the waiting begin

Oh please!!

Ok, so I was going to post a blog about how wonderful Skyler's appointment was. Her echo was excellent! Her EF was above normal and her EKG looked great. The doctor thinks the lightheadedness and chest pain is just part of the recovery. I explained how it mostly happens in the sitting position and how she sometimes has neck pain, choking, tingling feet, etc... Doctor said if anything was wrong (like pacemaker syndrome) that it would show on all these tests. So I left thinking maybe, just maybe, it was part of recovery. Maybe the nerves are healing causing pain and weird symptoms.

Then Skyler went to bed.......

Then Skyler walked out 30 min later saying it was happening.

Then Skyler slowly lifted her shirt.

Then Mommy was shocked to see her right upper abdomen (where the pacemaker is) pulsating, like a spasm.

Then Mommy said "Holy shit, can't fake that!"

Then Mommy emailed the doctors and told them she'll send the video along thru email as soon as she can "capture the moment"

Gotta love technology ;)