UPDATE sept 8th
we went home for a couple days but ended up being readmitted for fluid on the lungs again.

Hunter had his chest tube placed again today, they pulled more fluid off this time than ever before.

We spoke with the surgeon earlier today and the only hope we have to get Hunter home is to go back in and fix the mitral valve.

This is very scary for us because the last time he went in, the repair did not last and he ended up going into cardiac arrest and having issues with arrhythmia.

His surgery will be on Thursday.

Please everyone stop and say a prayer for my sweet little boy, this has been the hardest time of our lives. he deserves to be healthy and at home

Alright this is the update we’ve been waiting on..

9/2
Hunter needs a heart transplant.

As stated before his lung pressures are too high to be eligible for transplant.

They’ll be doing another cath procedure tomorrow that will run tests that will see if his pressure may be able to come down. If so, he will begin a treatment medicine that will run for about a month and if his pressures come down enough, he’ll be put on the transplant list.

If the cath shows no evidence that his pressure can come down, he will be sent home with medicine to prolong him as long as possible.

My heart has never hurt so bad, please please lift my baby up. We need tomorrow to show great results.

UPDATE AUGUST 28th

Hunter had his cath procedure done this morning, this was to gather information. As suspected the leaking is caused by the left atrium. The liningof the entire heart and severely in that area is scarred, this is causing many complications. Unfortunately there isn’t many options moving forwardto fix this issue. The cardiology team will conference on Tuesday morning to decide what will be done next.  I was told this may be the end of the road for his heart and a transplant will probably have to take place, I was also told the pressures in his lungs are too high to receive a heart at this time. 

Hunter underwent open heart surgery on August 10th in an attempt to repair his mitral valve, since he’s had many complications including cardiac arrest. Though the valve was improved, Hunter will be going home on lots of support because of new problems including arrhythmia and pulmonary function. The surgeon said he would not be surprised if Hunter had to return within 3 months for more surgery. I had intentions of returning to work once we we’re home but with being on oxygen and the other care he will require I am unable to go back.