Merry Christmas!

I cannot believe Christmas is this weekend! The year just flew by for me and I must say that 2011 was probably one of my best years ever. Skyler's pacemaker issues have been resolved, I finished school, got a few jobs and finally settled in at Chestnut Park as the memory care program director. 2011 was pretty sweet.

I doubt I'll be posting as much in the future. I just wanted to wish you a Merry Christmas and a Happy New Year! :)

Pacemaker Camp

Pacemaker Camp 2011

I am happy to report that Skyler had a fabulous time at Pacemaker Camp! She met lots of new friends and learned so much about herself. I'm so grateful she had this amazing opportunity.

Her favorite part was climbing the rock wall. I still can't believe she climbed that high!

There was a duck theme going on. Ducks galore were given to the kids.

The best part about all of this was hearing Skyler talk about how the other kids had pacemakers and scars too. She had a weekend away with kids just like her and she enjoyed every minute of it.

Sky is the blond on the left wearing black pants

So now we have to start thinking about next years camp. That means I need to step up my running routine. I need to beat last years time! Stay tuned, more information regarding the Keeping the Beat 2012 5K will follow soon!

Electrifying

Of course my daughter, Skyler, would be the child to get shocked while removing a plug from an outlet. Yup, the shock traveled right up her arm and into her pacemaker. I mean really, is anyone surprised? I am not. I emailed her doctors and asked if I should be concerned. They really don't think any harm was done but would like her to have an ekg just to be sure. I'll bring her in next week for that. The child kills me slowly each day!

On to more cheerful news... Skyler is now a karate kid. We just signed her up for karate this week and she loves it. She has been practicing her moves every night and has requested we purchase her a rubber knife and punching/sparring gloves. Rick has looked into purchasing a jock cup. (Is that what they're called?) Elizabeth is thinking about starting karate but she's not sure. She definitely wants signing lessons so I'll sign her up for those next week. Kayla is happy these days. We got her a car. She is never home now.... ha!

My jobs are going well. I still can't believe I am a nurse. All those years of hard work have finally paid off. I'm settling into my nursing career and trying to balance my family life.... and failing miserably. Things will be better once the kids are in school. Right now they are home all day and I have to leave them to either go to work or to sleep (I often work the overnight shift). Once they are in school I can sleep when they are in school and spend time with them when they come home. It will all work out!

That's really all there is to report. Life is good, hectic, but good.

Magnificent!

This had truly been an amazing month for me. My life is starting to come together and it's a magnificent feeling! To start, I passed the state boards and received my nursing license. So many years of hard work, aggravation, guilt, happiness and persistence finally paid off. I'm thankful to everyone that got me to where I am... they know who they are. Thank you so much.

My next bit of good news concerns Skyler. Sky had a cardiology check-up yesterday and, for the first time since November 2010, everything was within normal limits. Her heart function and size were all normal! This is so awesome! We are back on track again, such a nice feeling.

Last but not least..... I got a job today!! Actually I got two jobs today! The first job is with Milton Health Care. I will be working on a sub-acute floor and will learn so much! I can also pick up shifts on the other floors if I wish. There is an Alzheimer's unit, a behavioral unit and long term care. I was offered the job today and as soon as I got home I received a call from Benchmark Assisted Living (where I work as a CNA) asking me if I could work as a nurse this weekend. It was also decided that I will work Per Diem there as well. Two jobs! I can't even believe all this happening. I swear I am going to wake up from a dream. This has been the best month of my life!

Good news!

A more detailed blog will follow but I just had to share that I passed my state exam! I am officially a Registered Nurse!

Cabin Fever

I usually enjoy rainy days. That sleepy feeling of wanting to do nothing but watch movies, eat junk food and relax on the couch all day, it's a good feeling.

Usually.

I've been stuck inside the New Hampshire chalet for 3 days straight due to rain, cold, and one stubborn Sun. I came up with my friend so we could study for the big state exam on the beach, basking in the Sunshine. Instead we have been forced to study inside all day. It's quite depressing.

Cabin Fever is setting in.

Videos coming soon.

Goodnight and sweet dreams. ;)

Happy Father's Day!

This says it all.

A video Sky and I made for Rick.

http://www.youtube.com/watch?v=FsyfvTDq3kc

I'm having trouble uploading it to this site so just follow the link I provided above. Enjoy!

Transvenous approach for epicardial pacing: A Mom's Idea?

Well, that didn't last long. Sky is running around and I can't keep her still. She's also eating everything in sight! I feel like all I do is tell her to stop jumping and make her food. It's never ending. It just amazes me that she had surgery 9 days ago, a 7 hour surgery to boot.

I don't think I explained what happened during her surgery and why we have to be careful about moving her left arm. During the surgery the Doctor had trouble getting her lead into the proper position because Sky's veins are too small. It's difficult to explain without showing you a picture but the vein (coronary sinus) that runs along the hearts muscle was the problematic area. The lead had to go in a certain amount in order to sit properly, and if I understand correctly, exert a certain amount of pressure on a part of the lead that activates the coiled tip. The coiled tip is what keeps it in place. If the lead slips out of position even a little bit the part that keeps the coil, well, coiled, will fail and the lead will straighten and fall completely out of place. I probably didn't explain that very well, sorry. Anyway, the doctor is worried that since he couldn't get that lead in all the way that it will move and Sky will need yet another huge surgery.

I came up with this great idea while talking about the surgery with the doctor. I'm writing it here in hopes that someone will steal the idea and make it happen. The doctor was explaining the pros/cons of the transvenous approach as well as the thoracotomy epicardial approach. The transvenous is less invasive, faster, and easier but not always successful in kids with smaller veins. A small incision is made in the left chest and leads are run down into the heart and attached to the pacemaker, which is placed in the upper left chest wall. The epicardial approach is very invasive. A large transverse incision is made along the rib cage, the lung is deflated, and the leads are placed on the outside of the heart. This approach works best for kids.

Ok, so now that you kinda have an idea of the 2 different approaches...... I suggest a third approach, a hybrid method if you will. I suggest making an incision in the upper chest wall, dropping two leads down into the heart (right atrium and right ventricle). The ventricular lead is the issue. It cannot be placed into the heart (deadly). It must be placed either in the coronary sinus or on the myocardium itself. My hybrid method for the LV lead is a transvenous approach for epicardial pacing. Drop the lead down the vein just like the explained transvenous approach but once you get close to the heart "pop" the lead out of the vein and place the coiled tip directly onto the heart. This could be done (in my mind at least) by inserting a chest tube to deflating the left lung, gently go thru the heart covering and inserting a small instrument (laparoscopy) that could manipulate the lead into place. It is still invasive BUT it is no way as brutal as thoracotomy.... Especially if it's your 3rd thoracotomy! I asked sky's electrophysiologist why this approach isn't used. He paused and told me they don't have the instruments to do it. I told him to get on it and make it happen. So could someone out there make this happen please? You can take most of the credit, just let me be on the research team. Thank you :)

Side note: I'm not suggesting I am the first person to think of this. I have not been able to find any literature on the idea. If you are reading this and thought of it before me, yay for you... make it happen please.

testing... dancing Sky

Morphine dance

This was taken the morning after her 7 hour heart surgery!

Slight scare

I had a little scare this morning with Sky. When she woke up I noticed she had blood on her shirt. Her incision had what appeared to be a blood bubble and it was leaking watery blood. Not only that but she had a red papular rash all over her chest. I took a few pic and sent them by email to the doctor. Her Doctor replied right away and said the rash looked like an allergic reaction, probably to the tape or cleansing solution, and the incision did not look infected. We'll just keep an eye on it. The bleeding has stopped and I gave her Benadryl for the rash.

As far as Sky, she is doing great. She's up moving around more and walking a lot better. She's having no trouble keeping her arm still, something I was worried about. She wears her sling when she's up and it helps remind her not to lift the arm.

I'm thinking about stopping by the school tomorrow so Sky can say hi to the school nurse. She's looking forward to grossing her out with her new scars! I also promised her a Starbucks decaf carmel macchiato.... the child takes after me, what can I say?

Recovery

Just a quick blog to update you all on Sky's progress.

Today was a better day for Skyler. She was up and walking around a lot. Her arm and foot are still sore but the pain is manageable with percs and Motrin. She is totally grossed out by her new scar and her stomach scar is pretty nasty too. The doctor was so thoughtful though. During surgery he cut away some of her old stomach scar since it was pretty wide. He wasn't able to cut it all away because it would have looked odd when her closed her up, but at least her stomach scar will be thinner.

Sky is still walking funny but her heels are no longer red. It's so odd that she developed pressure sores! It is not something they normally see in healthy kids. It's mostly seen in the obese or malnourished. I guess her body couldn't handle such a long (7 hour) surgery. When she has surgery next time we'll have to take care this doesn't happen again. Thankfully they were just a stage 1 when I noticed them. She woke from surgery complaining that her feet and arms hurt. I took one look at her heels and realized what was going on. I propped her feet up on pillows and took care that the heels were not touching anything. The doctors, anesthesiologist, and the EP nurses came in to check on Sky and took the red heels very seriously. They were surprised this happened, but some things are just unavoidable. For the record, they took all appropriate actions during surgery to try to prevent this (gel packs, special mattress). It was just a long surgery.

Taking care of Sky has been a little rough this time around. I have an awful cold and just want to sleep! Thankfully Rick isn't working this weekend and has been able to help. He did all the laundry, went food shopping, made dinner and attempted to make soup. I laid on the couch barking orders for most of the day. :) I'm going to try to do the same tomorrow.

I'll post some pictures tomorrow. Thanks for checking in on Sky!

Home

Sky is home. Amazing!

She had an OK night. She vomited a few times and is in some pain but she is doing well. Unfortunately, she developed pressure ulcers on her heel due to the prolonged surgery. This makes walking pretty uncomfortable. In fact, this is the main thing she is complaining about. We just need to keep an eye on them and bring her back if they get worse.

She has been told that she must take is easy for one month. We need to try to keep that left lead in place! That means no running around, lifting, raising her arm above her head and no swimming. We go back next month for a check up.

Thanks for checking in on us. I'll post again later.

Still in surgery

Sky has been in surgery for 6 hours now. They are having problems getting the left lead into a good position. I don't know how much longer till they give up trying. :( I have no idea what will happen next, I just know this was supposed to be a easy 3 hour surgery.... the kid cannot catch a fucking break.

I'll post once I know more...

Surgery date is set

We are home from the hospital, finally. What an interesting visit we had. First I have to say that Skyler is such an amazing child. She wrote a bunch of questions and concerns for her and her doctor to discuss. I politely excused myself from the room so they could speak privately. I figured she'd be more comfortable speaking to him without me in the room voicing my opinion. So I left the room and 10 min later the DR came out because he got a phone call. Sky told me that he was talking to her about turning the pacer on. She was too scared to tell him she didn't want that. So when he came back I told him Sky was worried about asking one certain question. He got the hint, I left the room, and they continued to talk. 10 minutes later he had me come back in the room and he told me that they were not turning it back on and that he was going to replace the pacer. Sky will be having surgery Thursday. The Dr will move her pacer from her stomach up into her collar bone area. The wires will be placed into the vein in her neck down into the heart and the leads will be attached. We will then spend the night in the hospital and be released the next morning. She'll only miss a few days of school too. I'm thrilled we are going this route. The other option was placing the leads on her heart (rather than in it) and she would have had to have a huge thoracotomy as well as a sternotomy. It would have been so brutal. I'm relieved she doesn't have to go through that.

So that's my story :)

Graduation cake and operating rooms

What a month I am having!

First things first... Skyler had an appointment with her cardiologist today and her echo results showed a significant drop in heart function. Her EF was in the 40's. (it was up to 70) So something has to be done or it will keep dropping. Her doctor is going to book an OR for next week but in the meantime we'll head back to the hospital on Thursday to speak with her electrophysiologist. I heard he would like to turn the pacemaker that's in Skyler now back on and see if it still causes problems, or if the leads fixed themselves. (attached to the heart better since it's been off) I'm really not sure how I feel about this. I honestly feel like we should take it out and start over, seeing as though this pacemaker/wires have been nothing but a nuisance. However, it would be great if Sky didn't have to have surgery. I just can't shake the feeling that replacing it is the way to proceed.... so I'll probably fight for that. I'll know more later this week.

Skyler is doing wonderfully. She took the news like a champ and is looking forward to being spoiled. I'm a little frustrated with the timing of it all, but I've managed in the past and suspect this will be no different.

Cake! I did it. I finished nursing school, got pinned, and now I am studying like crazy to pass my boards. My graduation party is this weekend and I couldn't be any more excited. I'm looking forward to celebrating with my family and friends. I'm a little concerned that Sky's surgery will keep me from studying as much as I should be. I'll probably end up missing most of next weeks review class, if not all of it. Good thing nursing school taught me how to juggle!

I'll post more later this week. :)

Team Skyler!

Yesterday was the most amazing day ever!

As many of you know, yesterday I competed in a 5k race to raise money for Children's Hospital Boston Pacemaker/ICD Camp program. I am happy to tell you that the race raised 18,000 dollars (1500 or so from my family and friends) with more still being donated! It was truly a successful day in every way imaginable.

Team Skyler! was recognized by so many people. As I was running I had people I didn't know yelling out "Go Team Skyler!" Even the Hull Television reporters said, "Team Skyler Rocks!" on their Facebook page. (I'll post a link once they get all the footage up on the site.) So what made Team Skyler! so magical? Well, picture a group of about 20 people wearing Team Skyler shirts, cowboy hats, banners, and tutu's. Then picture a wagon decorated with hearts, butterflies, ducks, ribbons and beads. Now picture a radio blaring the song "we got the beat". And then imagine Sky being pulled in that wagon by my sister and tossing out Mardi Gras beads and bubbles to all the onlookers. Yup, we stood out and it was amazing.

Skyler was the bell of the ball and she enjoyed every second of the day. She met the people that run the camp and has decided that she does want to sleep over now. Why? Because crazy things happen at that camp, they actually hand out rubber duckies and she doesn't want to miss out on that! She met a funny clown who have her a hula necklace, sky then gave him a beaded necklace... it was cute. I embarrassed her (and probably myself) when I decided to get up and dance with the belly dancer. We all turned a little red with that one! She even won 2 raffle prizes! The kid couldn't have had a better day!

So the dreaded 5K race that I trained for.... I wasn't sure how I was going to do with that since I only has a few weeks of training. My goal was to finish it, not vomit, and not come in last. I am happy to report that I succeeded. Each time I felt like stopping and walking I just simply looked down at my shirt where I had written the names of all the heart kids and angels I know. They kept me going! I came in 132 out of 257. I was 28 out of 62 in my age division and my time was 31.59 min. Ok, so it wasn't marathon time, but I was super pleased! (mostly because I didn't vomit, but I mentioned that already)

Thank you all who contributed to making this day so special! We appreciate everything you have done and continue to do for us!

I am posting a link to my facebook photo album. Hopefully you can see the pictures.

http://www.facebook.com/album.php?aid=387741&id=599733760&l=6f80b161e9

Todays news

I'm going to make this quick because I have to get ready for class.

Sky had another cardio appointment today. I was expecting to hear her heart function had decreased and that she'd need surgery.... I was wrong. Sky had another great echo today! Her heart function remains normal as does the size of her heart. The plan is to go back in June or July for a repeat echo and go from there. If her heart is still normal we'll wean her off her meds, if not, we'll talk about surgery. Her EKG is still very abnormal, showing a bundle branch block. What that means is that as the electricity runs down the "wire" to the ventricles the right side gets the "electricity" first, followed by the left. They should receive the signal at the same time so that the ventricles can pump together. The weird thing is that even though her EKG shows a block, her heart does not. The ventricles appear to be contracting at the same time.

My take on this? So glad you asked.... I think the ventricles are probably not beating at the same time but they are off by such a minuscule amount that the echo can't see it. Eventually the heart will tire and the time between the contractions will start to show. She'll need a pacer then. However, that is just my guess and not something I have been told. Dr. Blume feels that sky probably isn't cured. She does, however, think it's possible she may not need the pacer or meds and that her function could stay normal. The only way to know is to try to wean her off everything. Why put her thru another surgery if she doesn't really need it? Or why do it now if she can wait 10 years?

On another note.. Thank you all that donated or signed up for the walk! I saw Ligia today, she is the nurse that is trying to raise money for the camp and the one organizing the race, and she said I was a "champion". She said I had so many people donating or racing in honor of Sky! She thanked me for everything I've done.... I couldn't have done it without all of YOU! If you haven't signed up for the race it's not too late. See the link in my last blog update.

Ok, off to school I go!!

Pacemaker Camp

On April 10 I will be doing a 5K run to support Children's Hospital in their quest to raise $30,000 in order to fund this years pacemaker camp. The race will be held in Hull at nantasket beach. This is very important to me. As you all know, Skyler has a pacemaker and this camp will offer her the chance to experience a weekend away without any activity restrictions. No one will tell her to "slow down" or "take it easy". She won't be reminded of her heart condition and she'll have an amazing opportunity to meet other children with the same issues as her.

I think it would be wonderful if all of you would consider running with us! The day is sure to be fun! There will be a live band, face painting, food, kite making, raffles and prizes. So even if you don't want to run/walk at least come out and enjoy the day.

Here are some links for more information. If you make a donation please be sure to say it's for Skyler.

To register to run/walk...

https://finishlineregistration.com/register.php?id=301&sms_ss=facebook&at_xt=4d7fe61a3d22ab7a%2C0

To make a donation in Skyler's honor....

https://howtohelp.childrenshospital.org/events/pfp/?ProfileID=JL0027&name=keepingthepace

Thank you!

What if???

Just for fun... my horoscope for this week.

Virgo

How long has it been since you were last touched by an angel? It would seem some deeply benevolent force is now watching over you. This week's outlook suggests there's kindness and compassion in the cosmic picture. Somehow, soon, you will be taken further away from a source of stress - and closer to a new reason to feel hopeful. You may be led in a number of ways from force of circumstance, to sudden coincidence to the direct intervention of a helpful, positive person who is clearly determined to ensure that you now finally leave a painful part of your past behind.

The more I tell people what is going on with Sky, the more I begin to think "What if..." I can't even imagine how life would be with three healthy children. No more health related stress, no more co-pays, deductibles, frequent doctor visits. No more expensive medications, surgeries, scars, or tears.

But what if she never was sick to begin with? Surely this ordeal has significantly shaped the person I am today, the person Skyler is and will be, and our family as a whole. What if she was healthy from the start? Perhaps I would not have gone to school to become a nurse. Perhaps Skyler wouldn't have the desire to become an electrophysiologist. Maybe Jessica, Elizabeth and Kayla wouldn't have learned to appreciate the fragility of life. Maybe we wouldn't have learned the all-to-forgotten lesson of pulling together as a family during stressful times, even when we thought we had pushed each other miles aways.

Everything happens for a reason, this I truly believe. So no matter what the outcome is, I know it's all for the best. So she might not be "cured". She may need more surgeries and more tears may be shed. My "what if's" tonight are not "what if she really is healthy?" Instead I question, "What if she never was sick to begin with?"

I'm not so sure my life would be as wonderful as it is now.

Not the news I was expecting to hear

Skyler had an appointment with her cardiologist this afternoon. I was expecting that her echocardiogram was going to show a decrease in heart function and that we'd set a date to have her leads surgically replaced. Boy was I ever wrong.

Let me back up a bit. Sky was diagnosed with cardiomyopathy at 6 months of age. Her genetic testing came back negative and her heart biopsy showed white cell infiltration. Though it was not definite, it was suspected that a virus caused the myopathy (by attacking the heart muscle). Usually when this is the case the child recovers within a year. Sky did not. She started medication and had a biventricular pacemaker implanted. She did very well with this treatment.

When her lead abruptly stopped working in December her heart function decreased and she had surgery to replace the whole system. So why now after having the pacemaker off for a few weeks has her heart function remained normal? Well, because we have literally lowered the pacemaker voltage slowly in hopes of minimizing her other symptoms. We also stopped it and turned it back on a couple times. Basically, we weaned her off of it without even realizing it. This prevented a sudden "shock" to her heart and allowed it to maintain its normal function. We also lowered one of her meds to see if that would help with the dizziness. It's odd, but we slowly weaned her from her treatment and never expected it to turn out this way. We thought for sure she'd have to have a new pacemaker right away. I was wrong.

So it is possible that it took Sky longer than normal to recover from viral cardiomyopathy and that she'll go on to live a normal healthy life. But I am not holding my breath. I am not getting my hopes up. Statistically the chances of this are small (That is my guess from all the reading I have done) and if it ends up being true I'd consider it a miracle.... and I am not a big believer in miraculous events.

What happens now? Her case will be presented at conference and a team of cardiologist and electrophysiologists will offer their opinions. I'll hear about that by next week, I hope. We go back next month for a repeat echo and if her function is down we'll definitely replace the leads and if it's still great..... Maybe then I'll get my hopes up a little.

testing

Just testing to see if anyone needs to sign into a Flickr account to view the photos or if Yahoo just opens the album.

http://www.flickr.com/photos/27523418@N05/

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 ;)

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.