because it means you understand too well how bad your situation is.
During Rowan’s cath, they measured pressures in different blood vessels and mapped out how his heart repair was functioning. We were hoping that they would find out that his shunt was having trouble and they could repair it quickly and he’d be good to go. His shunt was fine. His heart was fine. His lungs were not.
The blood vessels in Rowan’s lungs had pressures that were higher than they should be. This is likely the reason his oxygen saturation was low. Instead of going to the lungs to get oxygen, the high pressure in the lungs discourages blood flow and so Rowan’s blood was preferentially going back out to the rest of the body instead of recirculating to the lungs. This means that his second surgery will very likely fail.
There are medications that open up the blood vessels in the lungs to lower the pressure. That is what we are doing now to try to get Rowan’s blood flow rebalanced. There is a chance that this medicine can get him to the point where he can have his second surgery.
BUT – here is the bad news. There was one vein in his lungs that had higher pressure than the rest of his veins. This could be just an isolated thing, but it could also be the start of degenerative lung condition – and there is not a way to fix that. So even if the medications work now, eventually his lungs will be destroyed, and he will die.
We were given a few options:
1 – Try to lower his pressure and get him to the Glen and continue down the road we started on, hoping that his lungs are not degenerating. If they are degenerating, forgo the Glen and bring him home for whatever time he has left.
2 – Put a bigger shunt in to by him time. That is all it would do. It may buy him a few months, but he would eventually die and there is not a guarantee that he’d spend very much of this time outside of the hospital.
3 – Heart/Lung transplant. He’d have to live long enough to receive the transplant IF he qualified as a candidate and the survival rate is extremely low. He’d never be a teenager. It wouldn’t last his whole life, just a few years, and much of that time would be in the hospital. We would also have to leave him in the hospital until transplant – in St. Louis.
We’ve decided to pursue option 1. We have put Rowan through so much already. Our goal is to put him on the path to a long and happy life with us at home. If that path isn’t an option for him, then we want to bring him home with us for whatever time he has left.
So he is on a medication to lower the pressure in his lungs. Our CT surgeon has a theory that Rowan may have aspirated (inhaled) food when he has thrown up since he started being fed into his stomach and shortly after is when he got worse. We put Rowan back on an NJ for feeds and are trying this medication out. In about a month, he will go back to cath lab, and we will see if his pressures are better, and see if there are signs of a progressive lung disease. The surgeon told us that we needed to take a break. So Rowan is in St. Louis getting the very best care, and we are at home with our daughter, trying to be “normal” for a few days.
When I talked to the nurse this morning, it sounds like Rowan is doing pretty well. He was intubated for cath and is likely to be extubated soon. His saturation levels have been moving around a little, which is hopefully a sign that the medication is affecting him.
For now, we’re trying to enjoy some time with our daughter. We’re playing it by ear right now. We’ll figure out when we’re going back up later.
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