Thursday, April 1, 2010

Cardiology Visit...Unexpected News

 

Cardiology visits are something we just expect with Hope.  Every few weeks and hopefully moving to every few months, we will be taking Hope to see Dr. Prieto to make sure everything is fine.  We went today and just thought it was a regular echo and check up and that everything would be fine for another month.  Not so much the case.  We knew her pulmonary artery was small and Dr. Mavroudis made it bigger and patched it during her Glenn.  What we didn't know is that the sutures on the patch could create scar tissue and that could make the pulmonary artery small and decrease the blood flow.  What does this mean?  It looks like Hope will be heading back to the cath lab in the next month.  Dr. Prieto will be checking her again in two weeks, but is not real hopeful that it will grow in that time frame and she really needs the blood to flow well to her lungs or it will affect her lungs.  This is scary because she spent two nights in the hospital after her last cath and this time it is not only diagnostic...they will need to either balloon the pulmonary artery or put in a stent.  We talked about both procedures and they both seem equally scary and of course, the cath is no easy procedure either.  I found a good article on stenting:

What is a stent and how is one used?

A stent is a wire metal mesh tube used to prop open an artery during angioplasty. The stent is collapsed to a small diameter and put over a balloon catheter. It's then moved into the area of the blockage. When the balloon is inflated, the stent expands, locks in place and forms a scaffold. This holds the artery open. The stent stays in the artery permanently, holds it open, improves blood flow to the heart muscle and relieves symptoms (usually chest pain). Within a few weeks of the time the stent was placed, the inside lining of the artery (the endothelium) grows over the metal surface of the stent.

There is also the possibility/probability that Hope will need additional caths to increase the size of the stent as she gets older.  Another scary thought and more time in the hospital that we are not looking forward to.



On a happier note...the weather is getting MUCH better.  We are spending more time outside and Hope loves being outside.  She loves to swing and just be outside with the boys.  We are all looking forward to summer and being able to play more outside and spend more time with family and friends.  Summer brings parties and visitors and Hope loves new people.  She doesn't enjoy anyone poking at her, but she loves to smile and 'talk' to new people.

8 comments:

  1. Will keep Hope in my thoughts and prayers. ~Angie Montgomery

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  2. I will keep you in my thoughts and prayers.

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  3. As always, we will keep Hope in our prayers! Please keep us updated.

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  4. Oh this is pretty scary but I know God will continue to keep her safe. Thinking and praying as usual. ((HUGS)) I love the pictures, so adorable.

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  5. Paula, we are in the same boat as you guys, i am not sure if your LO had the Hybrid procedure, ours did witch meant PA banding for stage 1, and his left PA is small, right now they are just monitoring it and will most likely need a stent in the left PA before he is 1 year old, from what i know and other people i know from our hospital it seems to be a common occurence with our HLHS babies. there is so much reconstruction and sutures going in there that sometimes things cannot grow properly, our LO actually developed a mild CoArc in the decending Aorta after stage 2 hybrid Glenn, but it looks like he might outgrow it, so things can change, wishing your family the best and continued success. she is adorable BTW.

    Mario& Rita(babycenter)

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  6. Hope has done so well thus far even with all the odds she had stacked against her from birth. I have no doubt that this latest bump in the road will be something that Hope zooms right over in her normal fashion! As always we will continue to keep all of you in our thoughts and prayers.

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  7. I know the whole PA ballooning and stenting is a scary deal...been there done that numerous times already.

    My dear friend Jen, from "A Little Monkey Business" blog, her son has a stent and it has been ballooned numerous times. If you ever need anything answered on stents she'd be the one to chat with.

    Hang in there!! PRAYING!

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