Daughter's surgery

By mbueno Latest Reply 2012-12-08 23:08:06 -0600
Started 2012-12-04 12:51:24 -0600

Just an update on my four year old daugther who has had three open heart surgeries. The last one was perform back at the end of May. The last surgery was to help her live longer and to improve her oxygen levels. Well at the beginning the oxygen level was up to 93%, well we are soo disappoined because her oxygen levels keep dropping right now she is on 82% and she is turning blue again, and getting outwinded again when she is playing. Cardiologist said that the function of her heart is good, but her oxygen levels are on the lower side but not dangerously low and because of the fenestration that its on her heart she will have the tendency to turn blue.

I told her cardiologist that they told us before the surgery that she would not turn blue anymore and that her oxygen levels were going to be better and she is no better thatn before the last surgery. The cardiologist said that the only explanation that they can give us now is that since she has being so sick with bronchitis, cold, cough since September that that is what is causing her to turn more blue and to have a low oxygen levels, but then I told him back in August when you ckecked her her oxygen level was at 83% already and the day we took her in to see the Cardiologist it was at 81%. But that was all the explanation that he could give me. I guess they don't want a make a big deal out of this jet. But we would see what happens in January.

Cardiologist wants to see her again in January, he just saw her two weeks ago. He said that he would like to see her again and see how her oxygen levels are by then.

It is very frustrating. I want to do more for her but there is nothing else I can do. Just wait and see what the Doctors will do when they see its necessary.

5 replies

HeartHawk 2012-12-06 22:59:29 -0600 Report


Thanks for the update. We are all following your "little trooper" like she was our own. I have spent so much time and effort fighting heart disease in older people we forget what it can be like for the very young. The biggest advantage is that the human body is very resilient (as your daughter proves) so their is always the strong promise that things will adjust in a positive manner.

There is a fairly standard, tried and true procedure to correct your little one's condition. The hard part is even your doctors are in no better position to truly know the outcome. The only saving grace is that the outcomes improve every year. There will always be advances and setbacks as this situation is challenging. Thats she has made it this far is an excellent sign.

It is so hard when you love someone so much yet you feel powerless and have to depend almost solely on others like your docs. It also is hard when you fullly understand the pain and challenges a loved one faces. All I can offer is to embrace every day and, when you finally emerge together triumphant, to celbrate the victory every day afterwards. Until then, take whatever comfort you can in knowing the that every day science is advancing and the odds keep moving in your favor!



mbueno 2012-12-07 08:34:38 -0600 Report

Thank you soo very mucy for your conforting words. I am hopeful that she will get better and have good life. I know there will be good and bad times but we have made it this far like you said it is an excellent sign. She is such a fighter. Very strong will!!! Doctor said that is what has help her get this far.

Thank you for caring. It helps me, thank you. Because not a whole lot of peple really understand what is wrong with her.

Maria Bueno

HeartHawk 2012-12-08 23:08:06 -0600 Report


Sounds like your daughter had the Fontan procedure which would be the third and final surgery in the 3-step process to treat Hypoplastic Left Ventricle Syndrome (if I recall properly this is what she is being treated for).

The survival rate at this point is good but because the procedure is relatively new the earliest patients are only in their thirties now. Of course, that's actually a pretty good sign to be alive and kicking 30 years later!

Take care,


J Kate
J Kate 2012-12-04 17:39:27 -0600 Report

That is very frustrating. My heart goes out to you and your family. It kind of boggles me how some doctors seem very uninterested in what in my opinion is very serious. I have two kids with chronic illness and I get so tired of the whole- "We'll see what happens" mentality. Does that translate to- our plan is to do nothing and let them suffer till it's obvious we should do something. I hope you get some answers soon. Sending positive energy your way.