So, we spoke w/ the cardiologist on Monday evening - 6/22, and since that time we have been very worried. He said that they have now taken 4 echo's and each one has shown very little if any improvement. He basically stated that he is at the point where he is considering changing his diagnosis from Persistent pulmonary hypertension to primary pulmonary hypertension. Meaning that this is a condition that he was born with and as he grows the condition will continue on. Primary pulmonary hypertension is a diagnosis that is not compatible w/ life and eventually results in heart failure. There is no way to know how long that will take, but he said a great scenario would be 3-4 yrs - w/ around the clock monitoring and no other complications. But primary has been responsible for it's fair share of early deaths as well.
Apparently it is an exclusionary diagnosis. It seems as if he was preparing us for a dismal outcome. He isn't sure if that is exactly what he has, however babies w/ Persistent pulmonary hypertension typically resolve w/in 5-7 days, and we are now 2 weeks beyond that. He stated that primary is a very rare condition, and although it could possibly be another condition out there, the chance of that being the case is very unlikely. He did say that there have been cases of babies w/ Persistent that have taken a full 4-5 weeks to overcome the condition and transition into a normal healthy life. That is very rare in of itself. We have been worried all along, but had no reason to believe that our son wasn't going to improve, because he has improved quite a bit seeing where he was a short three weeks ago. This has been an exceptional weight to bear. Kellie and I have been extremely distraught and have had a difficult time coping with the news. Since Monday, we have grown so close together and are leaning on each other and family as best we can.
Today we caught our neonatologist in the elevator, and he brought us into his office to give us his take on the whole thing. He didn't deny the fact that our son may very well have primary pulmonary hypertension, he just stated that we need not lose hope yet. He stated that they still have a good two weeks before they will be out of ideas on how to improve his condition. Right now he is on steroids to help clear up the massive amt of inflammation he is suffering from the ventilator that supported him for 2 weeks. That may be the silver bullet. There is a surgery that can be done to aid in the erratic blood flow from the heart to the lungs, that may also improve the condition. However, there is no way to test for primary pumonary hypertension and only time can tell. They are very hopeful that they will get him off the CPAP machine w/in 3 days to a week from now and have him on the cannula full time. Once they get his feeding down then he will come home to us. He will most likely be on O2 support for many months, through the cannula, if not his entire life - once again it just depends on what his true condition is. They are taking echocardiograms twice a week to follow the improvement which tells them if the hypertension still exists.
One hope is that he will also grow out of it. For example, the damaged lung tissue he has now, potentially from the ventilator, may never recover, but 6 months from now he will have three times the lung tissue he has now, and if it isn't primary hypertension then the new lung tissue should be sufficient to help him overcome the disease. However if it is primary hypertension, then the new lung tissue will grow like the junky stuff he has now - and we will eventually lose him.
We are praying for a miracle to happen if it is the will of the Lord. We have already been tremendously blessed by having Mitchell as a part of our family, and pray that he will be with us for a long time.
We will be making posts ever so often at this point and hope to be able to keep all who are interested up to date.