Daugther

mbueno
By mbueno Latest Reply 2012-07-12 12:53:07 -0500
Started 2012-06-18 16:37:38 -0500

My three year old daugther had open heart surgery on May 24, but first she had a heart cath. The Dr. that did the heart cath told us that the two mayor veins or arteries that go down her legs that they are blocked. They don't work, but that her other veins are doing the circulation down her legs. I asked the Dr. if that is going to be a problem for her and he said that possibly not since she has those other veins doing the circulation but we have to keep an eye on her just in case something happens. But I am still worried, I just want to know if there is anyone outhere that the same thing happen to them. What are they doing for this, has this cause any problems for them? etc…

My daugther is doing better after her surgery the only issue now is that in some years we don't know in how many years she is going to need a heart transplant. It depends on how her heart will work as she keeps growing.


16 replies

harley64
harley64 2012-07-07 15:43:55 -0500 Report

It's good to hear she is recovering well, bless her little heart for having to go thru enough already so early in life. Hope she stays strong for you.

mbueno
mbueno 2012-07-11 14:12:28 -0500 Report

Thank you. Kids like her are such strong little people. I am bless to have her in my life. She is getting stronger. She is back to her old self again. Full of energy!!!

HeartHawk
HeartHawk 2012-07-11 23:13:46 -0500 Report

mbueno,

Wow, that was really fast! Our children are the most amazing things in our lives. I had almost forgotton until my first grandchild came along. His birth was not under the best of conditions but there is nothing that makes me happier than to see him. The pure love we feel especially with our young is simply exhilarating! Savor every moment!

I recently had a meeting with a prominent political figure at my house while my grandson was there. What he said as he left really made an impression. He said he would trade everything just to be able to go back in time and hold his son in his arms like I was holding my grandson. I almost cried as I hugged my grandson just a little tighter!

All the best!

HH

mbueno
mbueno 2012-07-12 12:53:07 -0500 Report

I know our kids are the best that we have and we should enjoy them while we can. They grow up fast. My oldest daughter is 13 and sometimes she does not let me hugg her or kiss her on the cheek she said she is too old for that!!! Teenagers.

Alejandra will start summer school next week to help her get an idea of what is to come in August when she goes everyday. So we will see how she does. The teachers know she is not suppouse to be outside in the head or sun for long periods of time and that she has some medical issues but she is a normal kid.

We will see how she does!!!!

berrykins0
berrykins0 2012-06-24 15:13:04 -0500 Report

glad shes recovering well sorry hear of blockage in her legs.

mbueno
mbueno 2012-06-25 09:48:02 -0500 Report

Thank you. She is doing much better now. Took her to the Cardiologist and they reduce her dose of Lasix becasue they were drying her out very bad and she was not eating because of the Lasix. She is on a baby aspiring a day now too and some other medicine that I cannot spell the name of ir. But she is a more happy camper now.

HeartHawk
HeartHawk 2012-06-25 23:25:35 -0500 Report

mbueno,

Great news! Keep us in the loop. We are all pulling for both of you! Let us know if you can think of that other medication.

HH

mbueno
mbueno 2012-06-26 13:15:46 -0500 Report

Her other medication is Spironolactone(Aldactone) Compound Suspension. She only takes it once a day usually at nigth. She is taking 5 mls. They flavore it for her. She takes it better than the Lasix.

HeartHawk
HeartHawk 2012-06-26 23:11:42 -0500 Report

mbueno,

Spironolactone has many uses but the primary one is to decrease blood pressure by inhibiting the production of Aldosterone, a hormone that signals the kidneys to retain sodium and fluids to increase blood volume (and pressure). Put commonly, it is a diuretic like Lasix but with a different mechanism of action (Lasix can also deplete magnesium and potassium so this makes it's use a little dicey).

HH

mbueno
mbueno 2012-06-27 09:05:39 -0500 Report

I asked her Cardiologist how prone was she to have a stroke. He did not like me asking that he said "why are you asking this?" I said because I always wanted to know if she was in any risk of getting a stroke. But the truth is I over heard a conversation when they were doing rounds they were talking in front of her room at the hospital and the door was a little open and I hear him talking to the Residents explaining to them how prone children like Alejandra are to have a stroke. He said that since she has had soo many procedures done to her she migth develop a blood cloth and it could go to her brain and cause a stroke. He did said that she is at the higher risk but we can do some things to prevent it such a take a baby aspirin every day, if we go on a trip stop and move around. Flying she can, but she has to get out of the seat and move around and we all know that on an airplane its kind of hard to do that. So I don't think we are flying any time soon.

I have another concerns she has a wire in her chest but it is by her heart. I asked him that too that what was the purpose of the wire in her chest. He said how did I know she had a wire in her chest and I said I saw it on the X-ray. He then proceed telling me that the wire was to hold her sternum together becasue it has been open soo many times it is hard to bond again so the wire helps it to stay together. But I don't know I saw the chest X-ray with her Pediatrician and she pointed out that she has five clips holding her sternum together but she did not mention anything about the wire. So I am guessing he did not tell me the truth or I just don't know. I am wondering if you migth know and if you do can you please explain it to me. Because I do not understand why the wire is over to the side and not directly on the sternum like I seen some pictures.

Thank you soo much for all of your information it helps me a lot.

Maria

HeartHawk
HeartHawk 2012-06-27 23:56:36 -0500 Report

Maria,

Wow, I really get angry when docs withhold info. They work for you - you are their bosses and ultimately pay the bill (even if insurance covers all or most of the cost). The stroke risk is due to pooling of blood. When blood "stands still" it promotes clotting. This often occurs in the atrium of the heart when pumping is incomplete or inefficient as often happens with conditions like atrial fibrillation (or other heart rhythm disorders) or artificial valves. The other risk is from blood pooling in extremities and clotting. This is known as Deep Vein Thrombosis (DVT). This can occur (mostly in the elderly but potentially to anyone with circulatory problems) when sitting in one position for extended periods of time such as on an airplane. People at risk for DVT are advised to move around to keep blood moving in the extremities. They also may be prescribed blood thinners (like aspirin and other more powerful prescription blood thinners like coumadin, plavix, and pradaxa).

The wire is not uncommon and where it ends up is a matter of "structural engineering." The wire simply adds mechanical reinforcement wherever the surgeon feels it is needed. It may actually be more centered but you may only have seen an area where the wire is not obstructed by bone tissue.

I'lll ask my cardiologist contact if he can elaboratemore in the issue.

Regards,

HH

mbueno
mbueno 2012-06-28 08:34:50 -0500 Report

Thank you soo much for all of your information it gives me piece of mind. Thank you thank you. :)

HeartHawk
HeartHawk 2012-06-28 23:33:23 -0500 Report

Maria,

Happy to help. You have enough to worry about! Being "left in the dark" is often more worrisome than knowing a harsh truth. I absolutely hate it!

HH

HeartHawk
HeartHawk 2012-06-18 22:23:57 -0500 Report

mbueno,

Thanks for the update and good to hear that your daughter is recovering. I am curious as to why your daughter's leg arteries were catheterized and check for blockages. Were the docs planning on harvesting leg arteries for use in the heart? Also, did your docs say why they were blocked. Atherosclerotic disease at that young an age is rare.

I am not certain who else might have hypoplastic left ventricle syndrome (which is what I recall your daughter has) but several others I know of live with significant heart conditions requiring surgery that might be willing to chime in here or perhaps you could contact them. Here are a few you can try off the top of my head.

cherokeeblonde
openhearts1110
katrina
bikerbay

Regards,

HH

mbueno
mbueno 2012-06-20 15:57:39 -0500 Report

Well Dr. said that her leg arteries got blocked becuse of the lack of circulation, but there are other veins that are doing the circulation down her legs. Its complicated I guess and hard to understand.
Taking her to the Cardiologist tomorrow instead of next week due to loosing her appetite and her paleness. She is just so pale.
Hopefully everything is OK. Will keep you posted.

HeartHawk
HeartHawk 2012-06-22 00:54:44 -0500 Report

mbueno,

Thanks for the update. Hopefully your duaghter will get stronger and get more color as she heals. It's a long road. Travel it one day at a time!

HH