October 26, 2010

Cardiology Update

Hello everyone! I know it's been while.  I know everyone is busy so I will spare you details {for now} about how I've also been so busy ~ too busy to write. 

Anyhow, this post is about Alexa and her cardiology appointment done yesterday Monday, October 25th.  I was a little nervous about the appointment because I knew she was be getting an echo done to check on the function of her heart not just a pacemaker check. 

Okay, so first of all I had to say this was the first appointment she had with no tears!  Yay baby girl! She behaved like a such a big and brave little girl.  She is 25 months old and weighs 28.6 pounds and is 35 inches tall (almost 3 feet!) I beleive that is about 90th percentile for height and about 80th percentile for weight! So happy my heart baby is thriving!

Okay, so they also did a blood pressure check and that was good and then moved on the echo.  Took off her shirt laid down next to her on the bed and gave her the lolli pop.  She was happy and calm the whole time!  She even gave me back the lolli pop and just relaxed and watched the Dora video they had on.  She did not fuss or complain not even once! I knew they were getting great images and would know exactly how her heart was functioning.  About 30 minutes later the echo was done.  We then waited for the results.

Dr. P came into see us.  She was not scared of him this time.  She actually found him a bit amuzing and engaged with him in his silly attempts to make her laugh and smile.  Doctor said the echo looked great! Her ventricles were great, no leaky valve, etc. I was so very releived!  So very relieved.  He did mention one thing however, that they will keep on eye on which is a small bit of stenosis where the conduit was sewn into to the top part of the pulmonary branch.  Has anybody elses child had this?  How fast did it change?  What was the protocol?  He said the number, I think pressure is 30 and they will just watch it, nothing to do about it right now.  He said that number is considered low to medium.  She will have another echo in 6 months to check on things.  He said when it gets to maybe around 50 he will decide then if they will do a heart cath to try and balloon the area a bit and buy some more time.  He said he does not expect the number to raise drastically though it should be a slow process.  I sure do hope so! Plus he mentioned once she hits 3 her growth should slow down also allowing more time.  She will just need a home transmission pacemaker check in 3 months but we don't need to go into the office until next April, I can't beleive it! Oh and she is also off all medicine for the first time in her life!  At this point she was only taking a baby aspirin daily but he also said she did not need it anymore! Woo hoo!

So overall it was a good almost great appointment.  I was very thankful.  He also checked her pacemaker and said also all was good she had to go pee pee potty so he kind of hurried up at the end and I did not get much details about the pacemaker settings just know all is good.  He said it was the first time I did not go into the office with a notebook of questions.  I don't think it was the first time, but he was right, I was more relaxed than with my usual 20 questions per visit.

So Alexa is doing great! She is totally my wild child.  Fearless as can be which scares me.  She climbs on top of things, runs away, wrestles our big lab dog.  She is two now! And I feel terrible I didn't post any little stats when she turned two, but remember at the beginning I mentioned how busy I've been?  So yeah, that's why.  I will say however, that she is currently obsessed with Toy Story and loves all things Buzz, Woody and Jessie.  Actually as I type this, she is here wanting me to find her Toy Story music cd so she can dance.  =)



  1. Michelle,
    My dear Rastelli Momma friend my heart just sank when I read about the stenosis. It sounds all too familiar. Six months post op from Logan's Rastelli and he too had stenosis where the conduit was sewn into his heart and also below the conduit valve. Two months later we had an MRI followed by a cath to balloon it. that area is impossible to stent. We got two years from the date of his Rastelli until they did surgery again to replace the conduit. It was approximately eighteen months from the time they ballooned it until he had the surgery. His pressures got dangerously high and were all over the place most of the time. He did get sweaty and pretty tired during all for this. We had to keep tabs on how many good days vs. bad days he had so cardiology could know how he was doing.

    I ams saying so many prayers for all of you and that you can get plenty of time before it needs replaced. Let me know if you need to talk. I am here. {{{HUG}}}

  2. Great to hear everything went well with her appointment. Alexa has become an example to many of us she is an amazing beautiful little girl. We will continue having her and your family in our prayers. - LBO

  3. Hi Stefanie, I appreciate your insight and struggles with this matter. Do you remember what Logans number was 6 months post op? I'm really trying to picture where Logans stenosis was found/located. Is it somewhere on your blog? I know Alexa's is right at the top where it meets the top part of the pulmonary branches - I guess where it T's off. I know they had seen this on the last echo but I forgot to ask him if it had changed since then. I might call back to see what that number was. The doc seemed very happy and relaxed about it all so I didn't get too stressed out although of course it will always be in the back sometimes front of my mind from now on. =/ It's currently been 8 months since her surgery and by the time they do the next echo it will be 14 months since her original surgery date. I also hope and pray that she will not need ANY intervention for a LONG time!

  4. Hi Michelle! I'm pretty sure I've commented before, but just in case ... I'm Joye and my son, Ethan, is almost 20 months old. He also had the Rastelli, AND has a pacemaker, so I feel like I'm reading his story on your blog!

    We've experienced the same thing with the stenosis, in the exact same spot. Ethan's original repair was in March of 2009. He grew so much so fast, that his pressures went from about 20 to 120 in a matter of 6 months. He had the conduit replaced at that time (after an unsuccessful trip to the cath lab). When the conduit is stenosed at the pulmonary branches like that, it really is difficult to stent it open.

    He is 14 months out from the conduit replacement, and the pressures are back up around 50. They haven't changed in about 6 months, though, so our cardiologist feels we still have some time, as well. It does have a lot to do with how quickly the child grows and, like your doctor said, hopefully a slower growth rate will give you even more wiggle room!

    Praying y'all can stay out of the OR or cath lab for as long as possible!

  5. Wow what a big girl! :) My 3 year old is 30 lbs hehe.
    Glad you had a good, almost great appt. I pray she needs no intervention for a long time either!
    Beautiful picture of her :)

  6. Hi Joye! Thanks for your sharing your comment/story! That is a huge amount in pressure change Ethan went through in six months! I hope as well that his numbers stay the same for much longer time this time around. I almost feel like I should type that Alexa's appointment wasn't that good but considering as heart mommas we live in short bursts of time holding our breaths till the next cardiology visit I just plan to glean whatever positivity I can from this past visit and try to just enjoy these next six months without trying to stress to much over what if's ... I will try. Best wishes to Ethan, when is his next cardio appt?

  7. I went through Logan's clinical notes and I found one a month after they discovered the stenosis when he had the ballooning and it was at 38 at the time and they were able to get it down to 20. His stenosis was right where the conduit was stitched to his heart and then also just below the conduit valve. I just realized in going back and reading your post that Alexa's is where the branch arteries meet. I can tell you from our experience that they can not stent in an area right where they stitched the conduit because of the risk of tearing also it is tricky when they balloon by stitching also. They have to be extra careful so DO NOT be surprised if when the time comes that they mention that to you and warn you of the risk for emergency surgery. I know it seems scary but with our experience they have the surgeon and the entire cardiac surgical team in the room when they do it. Hopefully that brings you some comfort.
    If you want to e-mail me here is my address


    Again, I am praying extra hard that you guys can get a while without the need for any intervention. It is stressful when it feels like they just had surgery and now you are dealing with the possibility of some other type of heart procedure/surgery. Keep your chin up Michelle! I'm here for you!!

  8. Hi Michelle,

    Very interesting that I read your post today when I did...We just had our cardiology appointment this afternoon (3 months post TOF repair with pulmonary conduit and valve placement). Liam's pressure was 80...up from 6, 1 month post op....We are scheduling a cath in the next few weeks. His stenosis is also where the valve is stitched to the conduit. Came as a very big shock to us...

    God very much led me to read your post today so I would be familiar with all these terms and possibilities...Praying for you Michelle, that you have a lot more time before this becomes an issue for yall!

  9. No entiendo lo que escribes pero deseo que estéis muy bien,sobre todo esa pequeñina tan bonita.
    Un beso enorme.


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