To those affected by a heart defect:

Plan B…again

February 24, 2007 at 1:19 pm by Mom & Dad

We had all hoped that Haven’s new medication would dry up her chest drainage.  The plan was to try the regiment for 14 days (Monday will be day 14).  In the cases where the medicine has worked, the fluid gradually decreased over the course of the two weeks until the drainage was very minimal or even stopped all together.  As of this afternoon, Haven has still been putting out a tremendous amount of fluid from her chest.  So, the next attempt to solve the drainage will take place on Monday.

Haven will return to the Operating Room on Monday where they will perform an exploratory thoracoscopy (fancy words for looking around inside the chest cavity).  If they are able to find the exact source of the drainage, they will attempt to stop the source from leaking.  If they are unable to find an exact source and find that the fluid is simply weeping from tissues, then they will perform a pleurodesis.  Pleurodesis is a procedure where the outside of the lung is “roughed up” and the lining of the chest wall is also “roughed up”.  The roughing up creates scare tissue and causes the lung to stick to the chest wall, thus eliminating the space where the fluid was seeping into.  Then since the fluid would have no place to go, ideally, it would remain inside the tissues and vessels like it is supposed to.  This type of procedure is not commonly done in infants that are Haven’s age, but we’ve already tried the alternate options. 

We’re not sure what time Haven will be going to the O.R. on Monday.  As soon as we find out, we’ll let you know.  Hopefully, these procedures will allievate her drainage problems so that we can move on with recovery and going home.  Haven has been stable otherwise and is pretty much back on a more normal sleeping pattern.  So, it’s been fun to be able to spend lots of time with her alert and awake.   

Posted in Recovery #1 | 1 Comment »

One Response

  1. Lisa Says:

    Hi. I am glad to hear that haven is doing better. I found out about your family from Link Nelson’s blog page. I go to 1st Baptist Church of Hamburg where I have heard about the prayer needs of Link and now found you. I believe that god will bring your family though this and haven will grow up to be a happy healthy little girl. I understand that this is a hard time for all of you but looking at the pictures and reading alittle of what is going on with haven you are all very strong and can tell that you trust in god that he will bring you all though. God Bless you all send my love and prayers. Look forward to more updates.

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This site contains the story of Haven Leigh and serves as a source of hope and encouragement to anyone who has or knows a child born with HLHS, a congenital heart defect, or other terminal illness. Here, we show the rewards of nurturing and supporting a special child while celebrating her memory by sharing her story with others.

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