The little things in life

It's really the little things in life that make me happy. A summer day spent by the ocean, a bag of red Swedish fish, finding 5 bucks in my back pocket... but none can compare to seeing Skyler sleeping on her side tonight! Okay, so she's not sleeping on her left side yet, but she is on her right. For ten days now I have watched her sleep flat on her back (totally not her preferred position)knowing that she was afraid to rollover due to pain. Boy, was I surprised to see her sleeping like that tonight. It was like sitting in the sun by the ocean and finding a 100 dollar bill in my huge bag of Swedish fish!

It made me happy.

It's the little things in life...

Recovery

It's been just over a week since Sky's surgery. Sky is doing very well. Her appetite and energy level increases each day. Evenings seem to be the hardest for her. She is often sore, overtired, and just generally wiped out, but it's nothing compared to those first few days following surgery! Her incisions seem to be healing well. She does have one area of increased redness and I am just watching it for now. She goes to her pediatrician on thursday to have the chest tube stitch removed. She's a bit nervous about that, but ready to get rid of it.
I'm a bit tired myself. Her sleep schedule is totally off. She's going to bed at 1am and waking a few times. Neither of us have had a full nights sleep since this all happened. I suspect that will change soon as I have woken her early the last two days. Fingers crossed.
I'm finding it difficult being home all day. I feel guilty for not being at school or work! But I know I am right where I need to be. Luckily, work and school have been very understanding about the situation, not that either had a choice really. I haven't actually looked into it but I assume I am covered under the Family and Medical Act... so I can take 12 weeks off in one year to care for a sick child. Yay! Job security! As far as school... blah... I am so far behind, or at least I feel like I am. I still haven't taken test 3 and the final is a week from Thursday. My professor told me not to worry and that I can take both tests the night of the final. I, of course, don't want to do that. I plan on returning to school on Thur and will ask to take the third exam before class. I haven't even opened a book since the day the school nurse called to tell me Sky was having chest pains! At this point I just need to cram to pass. I'm usually totally against that, I study to remember it, but not this time. So cramming session begins today!
I don't know how long Sky will be out of school. I'm thinking she'll return after Christmas vacation, though I may take her in for a half day next week. I'll just stay with her in case it's too much. We have tons of homework to keep us busy. She is looking forward to "playing school" with me. I, on the other hand, am having "are you smarter than a second grader" anxiety! At least I can contact her teacher if I get confused... hey, you'd be surprised at how confusing her school work can get. They don't teach math the way they used to (but that's a whole other blog!)
So that's recovery in a nutshell. Sky is getting better with each passing day and I am looking forward to things settling down and life returning back to normal. I hope we don't have to go through this again for a long, long, time!
Thanks for checking in on us!

Good to be home

We are home :)

Sky is doing so well! I just can't believe she is up playing considering all she's been through.

I really am in no mood to blog, to be quite honest, but I wanted to just give a quick explanation regarding the whole lead situation.

Sky had surgery to replace her pacemaker and her non functioning left ventricular lead. After the pacer was placed and the surgeon was testing each lead he realized the right ventricular lead was not pacing. Turns out the lead had detached from the R. ventricular wall and migrated to the right atrium. HOWEVER, a DR didn't read her Pre-op xrays correctly and it went unnoticed. We are only human, things go unnoticed all the time, and in the end, no harm was done.

So after surgery they told me the whole lead situation and I was not happy. There was talk about another surgery to replace the migrated lead. One doc hinted around to it, another said no, then another said probably.... it was just a confusing mess. They decided to do another echo the day after surgery and go from there. That echo was awesome. Her EF was up to 70 percent! (That's really good in heart language)

Then today we had to have the pacemaker checked again. I don't know the name of the machine but it's just a computer with a wand attached to it. The wand is placed on skys belly (her pacemaker) and the computer reads what the leads are "doing". This time we learned that the right atrial lead isn't working correctly.

So what does all this mean for Skyler? Good question. It doesn't mean a darn thing. As Sky doesn't require atrial pacing (she is only paced 2 percent of the time on the right) they reprogrammed the device to allow her PM to sense her atrial rate and pace her ventricle. Basically, it should not have any neg effects. They will, of course, keep a close eye on it. As far as the migrated lead, I have been assured that it cannot do any harm.

That is the story of the leads. Think it's confusing? It is, trust me.

Thank you all for thinking about us! I'll be sure to post about Sky's recovery soon.

I'm not sure if this link will work, but here are some pictures of our adventure at Children's Hospital.

http://www.facebook.com/album.php?aid=339457&id=599733760&l=ab1f4e03d1

Picture

Trying to upload a pic...

Update

Sky is awake and alert. She's in a lot of pain but the main meds are really helping. There was a complication. The right ventricle lead ( a different one that they were replacing) slipped out of place and up into the right atrium. They could not fix this since they were on the left side. Doctors are hopeful that the new left lead will be enough. If in a month or so her ejection factor doesn't increase then they will have to perform another surgery.... A less invasive bit still sucky surgery. Time will tell.
Sky is great though. She told me I should go to bed and get some rest. That girl is always thinking of others. I love that girl!

~Jacinda

Update 2

Just got word that the lead is in and they are starting to put the generator in now. Everything is going well.

~Jacinda

Update

Sky is in surgery now. She will spend the night in the ICU and the chest drainage tube will removed tomorrow. I'll update again soon.

~Jacinda

Teeth

Sorry, I guess I should have been more clear regarding the removal of Sky's teeth prior to being placed on a ventilator. The teeth are baby teeth and they are very loose. The doctors think it would be best if the tooth fairy came for a visit while Sky is fast asleep.

I'm finding it a lot easier to worry about a few missing teeth than the actual surgery, so there is no need to remind how easy it is to pull out teeth. I know it's no big deal :) Sky doesn't know they are pulling them. I did tell her, however, that the breathing tube might knock out a tooth since they are loose and that the surgeon will put it in a bag for the tooth fairy.

This is the only lie I have told her about tomorrow. That's why it's killing me. But I think telling the truth, while making me feel better, will only scare the heck out of her. So I will stick to the story and make sure the tooth fairy brings extra expensive gifts!

Surgery

Skyler is so excited for her surgery on Monday. It started off that she was just excited to be spoiled rotten but now she's just looking forward to being able to eat again. All I heard today was how hungry she is, yet the thought of food made her sick. When she did eat she vowed never to eat again because it made her stomach ache so much. I think she managed to get down a banana, 2 clementine slices, a couple teaspoons of rice, 3/4 of a Mcdonald's hamburger (yep, I know) and a small bowl of plain pasta. I have been reminded of her G-tube days and I don't like it. Luckily, once her new pacemaker is in she'll regain her appetite.

Maybe I should start at the beginning?? At least the quick version of the story.

I got a call from Skyler's school nurse that Sky was having chest pain and that her pulse was irregular. I didn't panic, this isn't the first time I have been called to the school for chest pain. In the past she always checked out okay so I didn't think this time would be any different. I was wrong. I took her to the ER at Children's Hospital and after many, many, hours (of course), we learned the lead attached to her left ventricle had stopped working. Sky's chest pains were caused from arrhythmia's. Thank God Sky is so in tune with her body! The Doctors also suspected that Sky was feeling the lead pulse, shocking her (though it is NOT a defibrillator) and causing a tightening feeling in her belly . They had no choice but to turn off the pacemaker.

Which brings me to her surgery. Seems pretty basic, pop out the pacer and plop another in. Unfortunately, that is not the case. A new lead has to be attached. That isn't routine with Pacemaker changes. The same leads always stay in, just the generator is changed out. So how do they get those pesky leads in? I'm glad you asked! They will perform a thoracotomy, inserting tools into her side rather than cutting thru the sternum. The tools will be guided towards her heart, will cut thru and remove scar tissue if possible and will cut thru the sac protecting the heart muscle. A lead will be scoped down and placed on the left ventricle. The top of the lead is a coil and it's just twisted into place. Then they will spend time testing the pacemaker to make sure they have it in the right spot.

The pacer in sky's stomach must come out. They will cut thru the scar she has now (probably a little longer since she's grown) and pull it out. They had trouble with this during the last surgery but it wasn't anything life threatening. The pocket that they make to slide the pacer in kept tearing, so they had to keep moving spots. Hopefully that's not an issue this time.

After the surgery she will go directly to the ICU. She'll have a few IV's, including one in her neck, a chest drainage tube, a urinary catheter, she'll probably still be on a ventilator and she'll have a couple less teeth. Yes, I said teeth. They need to pull two before putting in the breathing tube! This really bothers me, which is hysterical.

Recovery: They don't think she'll be in the ICU long at all. Any tubes and drains she comes out of surgery with should be removed rather quickly. We'll then be moved into our room on the cardiac floor. I really hope I don't have to share a room with a screaming baby. Selfish of me, I know. But unless you have roomed with a screaming baby, that doesn't belong to you, then you have no idea!

So tomorrow we are having a family party. My mom is cooking Sky's favorite foods and I have a feeling the spoiling will start once my mother walks thru the door! And that's good. We'll eat, we'll laugh and we'll love. (Oh, kinda like eat, pray, love but way better... mostly because that movie sucked and my life doesn't)

Thank you for all the well wishes. We truly appreciate it.

Happiest place to be

If you asked your kids where they believe the happiest place on earth is they'd probably say Disney, or six flags. If you ask my kids they'd probably tell you Children's Hospital. Seems weird, doesn't it? I had to swing into Children's today to pick up a couple prescriptions for Skyler and oh boy, was she ever excited to go. She quickly tossed on her best Doctor apparel (Her white Dr. jacket with her name scribbled in black in the upper left corner) and off we went.

First stop, the glass elevator. It only goes up one floor but Sky thinks it's the most amazing ride ever. The view of the lobby is "awesome". From there we passed the stage. Today there was a magician making peanut putter and jelly disappear... this was serious business so we had to watch! After that we made our way to the clinic. Each passing doctor stopped to greet Skyler with a, "Hello Doctor, how are you today?" and Sky would politely greet them, but then mumble, "I'm really a nurse." After we picked up our scripts we decided it was food time, so off to Au Bon Pain for some of Sky's favorite breadsticks. I spent $15 on bread, basically. Money well spent if you ask me!

During our visit Sky saw some kids hooked up to IV's. They were sitting in wheelchairs and watching the fish swim around in the huge fish tank. Sky looked at me and said, "See those kids over there? They look happy don't they? It's because this is the happiest place to be."

And it is a very happy place to be, for a child.

Heaven

Tonight the moon seems a little less beautiful, and tomorrow, the sun will be a little less bright. But the stars are going to twinkle with more passion now than they ever have before because Lorenzo has made it to Heaven. My thoughts are with Heather and her family. Little Ren will be greatly missed. He was just 7.

Magical Wishes

I am happy to report that Lorenzo has made it to Florida! The whole family drove down and after a few minor bumps in the road, sorta speak, they have reached their destination.

Skyler and I went to visit Lorenzo while he was in the hospital. I'll admit I was a bit worried about Sky seeing him. I worried that if something happened to Ren that Sky would be devastated... and I'm certain she would be. However, you just don't abandon a friend in need, no matter how much it could hurt you in the end. That is probably the best lesson I can teach my child. She loved visiting him! She actually didn't want to leave because she was having such a wonderful time.

I'm so happy that little Lorenzo's wish to "see the princesses" has come true!

His surgery is scheduled for June, after he returns from Florida. I'll keep you updated.

I'd also like to thank everyone who sent Lorenzo cards. From what I understand, they are still being delivered to the hospital. His Dr. said she'd hold on to all the cards for him and will give them to him when he gets back. Heather informed me that Ren was so excited to receive the cards and that they really made his day. So thank you :)

Another quick thank you... Thank you;

Blanton Built Customs

528 W Market St
Smithfield, NC 27577
919-989-0000

Heather got a flat and had trouble getting it fixed. She met Ed (owner of the shop) and he offered to fix it for her at his shop. He had the family back on the road in no time. Thanks Ed!!!

It just makes no sense!

Each day I struggle with the same questions. It's like a riddle that will never make sense and never be answered. Why do little kids have to suffer with adult diseases? Why must they fight to live? How can we, the parents of these kids, muster up the strength to watch them go thru painful procedures, surgeries, and loss... Loss of the normal life so many other kids get to enjoy? It seems almost impossible, but yet we do it.

I had the privilege to attend a very special birthday party this past weekend. It was one like no other. There were balloons, a jumpy house, face painting, raffles, an ice cream truck, fire engines, pizza, a dance show, goodie bags and over a hundred guests. It was even held at a fire station! I was so happy to be there! So why did I find myself tearing up throughout the day? Because the party was way more than a celebration of birth, it was a celebration of life. It was a celebration of a mothers love for her child, of all her wishes and dreams for that child. It was a celebration of hope. We celebrated Lorenzo.

I met Heather 7 years ago at Children's hospital. We were sitting in the waiting room holding our babies. She sat next to me and asked me what my daughter had (we both knew the kids "had" something, we were in the cardiology clinic). I told her Sky had dilated cardiomyopathy. I'll never forget what she said, "OMG That's what my son has! It's so rare, I can't believe they both have it". We exchanged numbers and have kept in contact ever since.

Unfortunately, Lorenzo's heart became too diseased and he had to have 2 heart transplants. Though I can't go into to details about his current status or prognosis, I can tell you that the birthday party was also a fundraiser. The family just wants to take their baby to Disney. They want his days filled with happiness and love... not pain and sadness. They want what every mother of a sick child wants. More time. More memories. However, It seems that Ren will have to have a very serious surgery before he can go to Disney. He'll have to have shunts placed in his coronary arteries to help keep them patent. He is scheduled to have this done on May 13th. Please, Please, keep him and his family in your thoughts and prayers!

Heather is absolutely amazing, I know she hates hearing that but it's true. She handles all of this with such grace. She is truly an inspiration to me. So my thoughts and my prayers are going out to Lorenzo. I wish him a successful surgery and speedy recovery. But most of all, my wish for Lorenzo is that he gets to go to Disney... because that's where dreams really do come true.

A few new pics

Lalala don't mind me..

I'm just trying to organize the old posts.

March 20, 2010

Oh it's been quite a while since I updated! I guess life has kept me rather busy, I do apologize. Skyler recently had a doctors appointment. She is doing fabulously. Her heart size and function are within normal ranges and her pacemaker battery has about 12 months left. So I guess another surgery will be planned at our next appointment in August.

Sky is doing well. She is happy, active and the funniest little thing ever!

Making the switch

I've decided to post Skyler's updates here rather than on her website. Blogger is just so much easier so I'll be able to post more. Her website can still be found at http://sites.google.com/site/skylerbragg/skyler%27sjourney but I will not be posting any new updates there.

updates

Kids bounce back so quickly and it always amazes me.



MAY 21, 2008 Pre-Op

Sky did great today! We were at the hospital around 8 and we left at lunch time! I think that is a new record for us. Today's visit consisted of x-rays, labs, ekg, physical, and meeting with the doctors. Fun fun fun. Actually, Sky really enjoyed it. We were happy to hear that she will be the first surgery tomorrow. We'll be at the hospital at 7am and she should be taken to the OR around 8ish. The procedure should take a couple of hours and then she'll be in recovery for at least 6. Poor kid needs to lay flat on her back for 6 long hours. Luckily for Sky, she has some pretty wonderful friend's and teacher's that made sure she would not get bored. Everyone in her preschool class brought her in a gift. Sky will keep busy with all her new toys and she is pretty happy about that. We are so lucky to have so many fabulous people in our lives!

I will update as soon as I can tomorrow. Thank you all for the comments on the main page. I read them to Sky every day (sometimes 3 times a day!)

May 22, 2008Surgery update #1

They took sky into surgery around 8:30am. The procedure should be a 3 or so hours (which means 3-5). We are waiting for our update now. Sky did great this morning. I woke her up at 4:45 and told her it was time for her surgery, she sat up and said, "YAY! Elizabeth! I am having my surgery today!" Elizabeth, still sleeping, did a little moan. Sky replied with, "It's okay, I'll be okay". So cute.

So as far as the surgery.... I had a weird feeling and I couldn't pinpoint it. When we arrived there was talk about placing a new lead. This was news to me. They also didn't know about her cath. I started to panic and asked to speak to her doctor right away. Plans changed. They ARE doing the cath but instead of going from her groin up to the heart they are going to try to go thru the neck and down into the heart. They are also going to add another lead directly into the heart and attach it to the septum. They think that the old lead that is attached to the outer AV node isn't working as well as it should be. This should not be confused with the lead previously in question. That one, while not working at 100%, is not being replaced (too difficult of a surgery). The doctors are hopeful that by attaching this lead directly into the septum that her heart function will improve. I am comfortable with this.

Skyler was so excited when we got here. She kept asking for her "sleepy" medicine and when she finally got it she decided it wasn't worth the excitement. It tasted gross and made her act silly. She was crying and laughing and saying, "Mom, I have a joke wanna hear it?" Then she would pause and say, "Ummm I forget". It was funny in a sad kinda way.

May 22.2008 11am.

Just got an update. Everything is going well. Sky fell asleep no problem and things are moving as planned. They are about to start tunneling in the new lead and they completed the cath.

We are looking at another 2 hours. Blahhh

May 22, 2008 2pm


Okay, she is out of surgery, awake and alert. Everything went well. She has a new scar... yippee. She is a little sore, but not too bad. She asked for a drink already (good sign). We will be spending the night. Her stats look good and they will do another echo, ekg, and chest x-ray before moving her.

I'll post more when new information becomes available. Thank you :)




May 23, 2008 10am

I am sorry that I haven't posted. Skyler was very clingy last night and really uncomfortable. The only thing that took her mind off everything was watching herself on my webcam. So between that and watching Elmo on the laptop, I just couldn't post.

We are HOME! It was a long night. Skyler was awake for most of it and I won't lie, she was in pain. She was able to get up and walk to the bathroom though and when they sent us down for x-rays I stole a wheelchair (silly nurse expected her to walk the whole way, I made her walk half (good to walk/gas and all) ) and we took a little detour to the huge fish tank. That was a lot of fun.

Sky was sent home on some new drugs. Thay added lasix to her list of heart medications. The doctors hope that getting rid of some extra fluid will help her heart (lasix increases urine output).

Give me a few minutes to settle in, make some calls, and eat and then I will post all the medical information.

OH! and a great big thank you to Great Yiayia, The huge stuffed dog worked as a pillow on the way home. I put the dog on her lap and then put her seatbelt on. It made the ride home better... she even fell asleep. Thank you

Update as of today, May 24th

Skyler is wonderful. She got a good nights sleep and woke up feeling so much better. She has been eating well and being silly. She moves very slowly and is grossed out by her "boo-boo". She needs help sitting up or rolling over, but she is managing. She is so much better than yesterday. Yesterday she was in a lot of pain. She didn't even want to move. She just layed still in my bed for most of the day. She would walk around once she got up to pee, so that helped.

As far as what the doctors are saying. The catheterization showed high pressures in her heart (16). The constant high pressure is not good for her lungs. They need to lower this pressure and hope the new pacemaker with the internal lead will help. They also added lasix to help make her pee more, ridding the body of excess fluids (better for the heart). She will have another cath in 6 months to check heart pressures.

Now for the good news. They did another echo (ultrasound) before we left the hospital and there was a notable improvment in her heart function already. We will have another echo in one month to check for further improvements.

While her heart function has decreased, it is no where near as bad as it was. I know sky will be back in the normal range in no time. :) yup, she is that amazing.

May 27th 2008,

Skyler is napping. We went to visit my mom last night and sky fell asleep in the car on the way home (got in at 10). She woke up when we got home and stayed up till 2 am! We missed the school bus and I had to drive Lizzy to school. It was a hectic morning. It's mornings like this that leave me feeling like a shitty mom. I have spent so much energy the last few days on Skyler that I feel I have neglected the other kids. This morning was so rushed that I don't even remember if Lizzy had breakfast... she said she did... but I feel awful that I didn't ask what it was (she could have had cake for all i know). We are usually more careful not to allow skyler's illness to interfere with our parenting. The kids know all about Skyler and her disease but we don't let it run our lives. We treat her like any other kid.. she get's no special treatment. But when sky has surgery, doctor appointments, and bad news all my energy is put into her. I guess that is normal, but kinda sucks for the other kids. Being a mom is hard work!

As for sky, she continues to improve daily. I think I will bring her to school tomorrow just for a visit. I'll leave her for an hour and go grab a coffee. That way she can see her friends and bring in her walk a thon donations ( the goal was 250 bucks, sky raised $250 on her own! if anyone else would like to donate to Childrens hospial please email us (link below.. "email sky" ) and I'll let you know how! All the money goes to Children's hospital in Boston).

As I mentioned previously, sky will go back for a post-op visit in 2 weeks and then a full work up in a month. The full work up will include an echo (ultrasound of the heart), chest x-ray, a pacer check, and an ekg. We should know by then if the heart function has improved more. If not, she will be put on more medication. Right now she is on coreg, enalapril and lasix. If the heart isn't functioning as good as they would like they will add a couple more meds to that list... yippee (not).

June 13, 2008

Happy Friday the 13th! Sky had her post-op check today and is healing nicely. The did a quick pacer check and played with her settings. Everything is set to where it's suppose to be now. I guess there was a little problem with the pacer check they did when we were leaving the hospital. One of the leads wasn't set to capture, so Sky has gone 3 weeks without her LV (left ventricle) lead working. It fine now, and didn't do her any harm. Mistakes happen.

So we will see Dr. Blume in about 6 weeks. It was suppose to be a month, but since the lead wasn't working we know there hasn't been an improvement in her heart (size, function). This probably sounds bad, but please don't worry, Sky is fine, no harm was done.

June 19, 2008 (1AM)

Hi everyone. I just wanted to post a quick update on Skyler. Since the surgery Sky has been having some behavioral issues. She was very mean and talking about strange things (fire, death). This obviously wasn't normal! I assumed she was having some post tramatic stress issues, and that still may very well be the case... but you all know me.. I did some internet searching and learned a few things. First, Enalapril (the new medication she was put on) can cause mood/behavioral changes. This is very rare, but still possible. I spoke with her doctor and we decided that stopping the Enalapril for now would be in her best interest. I also learned (I love google) that Enalapril can cause potassium levels to increase or decrease from the normal range. Syptoms are mood changes, behavior changes, cramps, numbness. Sky was complaining that her feet felt weird.. I didn't think much of it until after reading all this. Anyways, we stopped the Enalapril yesterday and she seemed much happier today. What does all this mean? Well, we go back to Children's hospital July 29th and if her heart function still hasn't improved we will try a different medication and hope for minimal side effects.

I am very comfortable will the decision to discontinue the Enalapril. I can't imagine how awful that made her feel. If you know Skyler, you know how happy she always is! Seeing her so out of it was very difficult. Poor kid has been through enough, the last thing she needed was to be feeling that way.

Summer is here! The kids are finished with school! Elizabeth was very excited. It turns out she "got the best third grade teacher ever and she is so nice". I agree with that statement as Kayla had the same teacher when she was in third grade. Kayla wasted no time starting her summer vacation. She had a group of girlfriends over for a pizza party this evening. Nothing like a house full of giggling girls to remind me as to how long summer really is.

July 28, 2008

Wow has it been a month since our last update? I have no good excuse either. Today Sky had her appointment with her cardiologist. We had to be there super early.. yuck. Getting into Boston for an 8am visit is awful! Sky was a trooper though. She had an ekg, echo (ultrasound of her heart) and a pacer check. Everything looks great. Her heart function is within normal range for a child her age, albeit on the low side. Her heart however is still a bit enlarged. Her doctor isn't too concerned because her function has improved so much. Let's not forget that she is still much better compared to pre-pacer surgery. It was decided that she will be put on another medication in addition to her coreg. The lasix has been discontinued and we'll go back again in 4 months. I am pleased with todays news. I was hoping that both heart size and function would be normal, but I'll take any improvement at this point. I am anxious about starting school in the fall. I know that if she needs to be hospitalized at all that I will have no choice but to drop out of school (nursing school drop out.. sung in my best Pink Ladies voice". I just couldn't imagine being in school while my child was in the hospital.. regardless of who was there in my place. Hopefully I won't have to deal with that. It does suck that once you start nursing school you are not allowed time off. No exceptions, there is just too much to learn and hours in clinicals need to be accumulated. Fingers crossed.



So that's my news for the day.

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

Dilated Cardiomyopathy

Skyler is a happy, energetic seven year old with a heart condition called Dilated cardiomyopathy. When she was diagnosed at six months old her prognosis was poor. With a five year survival rate of only 40-50%, my husband and I were scared that Skyler would not survive. Now, seven years later, we are thrilled at how wonderfully she has responded to treatment and we are grateful for all the things she has taught us. She is currently maintained on Coreg and Cozaar and has a pacemaker to coordinate the pumping action of both ventricles.

On May 22, 2008 Sky will have surgery to replace her biventricular pacemaker. This will be her third surgery in four years and I thought this would be a good place to post updates. Sky is pretty excited about her upcoming procedure. She has got to be the bravest little girl I know. When I talk to her about her surgery she says, "I love my doctor, can I have it today?". I can't imagine an adult saying such a thing, no matter how nice the doctor.

I guess I should list some boring facts about DCM. I don't really pay much attention to them but I know others are curious. The thing is, we don't treat Skyler like she has a heart condition. We treat her like any other five year old.. I want to reflect back on all the wonderful things Sky DIDN'T miss out on. No ones life should be defined by a disease.

DILATED CARDIOMYOPATHY



Childhood dilated cardiomyopathy (DCM) is characterized by a dilated left ventricle and systolic dysfunction, and in some patients also by right ventricle failure. It is a serious myocardial disease, usually idiopathic (no known cause), but its infectious, metabolic and genetic aetiologies are increasingly revealed. DCM frequently results in heart failure and sometimes death. It is the most common form of cardiomyopathy and the most common reason for heart transplantation in children.


Affects 6 per one million children a year

Cardiac muscle (the heart) becomes enlarged and stretched out, usually starting in the left ventricle, making pumping blood to the body a difficult task.

Can eventually lead to heart failure

The cause is usually unknown

There is no cure

Some children eventually need heart transplants. Others remain on medication. Some children recover completely (usually only in the first year)

Again, I don't focus on all the things that can go wrong. I choose to focus on all the great thing that have gone right.