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!