Rock and a hard place

This roller coaster ride just gets more twisty turny crazy one day at a time.  Porter had another brief episode last night but was able to come out of it quickly.  His heart and his overall condition seem to get a little worse each day.  We had a family meeting today with our CT surgeon, Cardiology, and our PICU staff to discuss options for Porter.  They have all been in contact with Texas Children’s and several other hospitals around the country for different opinions on Porter’s case as he seems to throw a lot of curve balls.  The docs always say – “if this is something that normally works with a patient, it’s probably not going to work for Porter.”  He has been writing his own story since the day he arrived at 101 Manning Ave.  (PICU in Chapel Hill)  Our doctors feel that Porter has reached a point in their care where there is not much more they can do for him besides wait for a transplant and with the offers on hearts being pretty much non-existent right now they feel it would be a good idea for him to go to a center that has had more experience with infants withNoonan’s syndrome, Hypertrophic Cardiomyopathy and lung disease. There are devices that can be used while waiting for a transplant such as a Berlin Heart should Porter’s heart function diminish to the point of it not being able to sustain him which the docs at Texas are able to surgically implant.  Texas is also looking at a surgical procedure that could potentially gain him more time.   

As long as Porter remains stable, I will be traveling to Texas with him either tomorrow or Friday and will be there indefinitely while Steve stays here with Oliver for now. It’s going to be so hard leaving Oliver and Steve here in North Carolina but we’ll take it day by day.

It is going to be sad to leave the PICU as we have built great relationships with all the staff.  We have nothing but great things to say about our Doctors and nurses here and the care that Porter has received. We so appreciate them for looking carefully at every option available to Porter and his care.  He would not be alive today if it weren’t for them.


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