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.