Hope is a funny thing

Again, the last few days have been a turbulent volcano of emotions.

After our meeting on Wednesday, Scott and I immediately started doing research into pulmonary vein stenosis. It’s a rare condition, not easily treatable, if at all. We had hope though because one of the studies we found gave a 0% mortality rate for PVS that’s only in 1 or 2 veins; 85% in 3 or 4. We thought we remembered that’s what was said in the meeting. We also started looking at various treatment options, to get a full understanding of what we’re dealing with.

Stints/catheters: these are only temporary fixes. They buy about 4-6 weeks with each procedure. Sam’s not big enough — he’d need to be 20+ pounds.
Lung transplant: a permanent solution, requires lifelong care. Sam’s not big enough.

So what do we do? We want more answers. The next day we talk to the doctor on duty. Our hope is crushed. He tells us that the PVS is in all four veins. We’re devastated. Disbelief. How could we have come so far, overcome so much, than now we have to face this? He said that though some babies will do great for a long time, because of the PVS and pulmonary hypertension, when they go down, they go down fast. How much time do we have?

We do more research. There’s a study happening now that uses chemotherapy drugs to treat PVS. The reason is that PVS, though not a cancer or tumor, acts like a cancerous growth. It’s the reason stents and catheters are only temporary solutions. If you remove the obstruction or widen the path, the growth just returns. So the hope is that the chemo drugs will counteract this. Hope? Is Sam a candidate?

The visit with Sam that evening was tough. I see his doctor at the hospital, the one who said it was in 2 veins. I corner her: What is it? You said 2; the doc yesterday said all 4. She looked startled, said her understanding was that the stenosis was only in the left side. I relax, see a small glimmer of hope.

Yesterday we talked to the other cardiologist on duty. He told us that Sam’s condition is bad, that there’s basically nothing we can do, no options. We argue. There has to be something, even if experimental. You aren’t even going to try?! We’ve lost all faith in the cardiology group. He did promise to contact the other hospital doing the study. We’re going to contact more hospitals ourselves. People are always asking what they can do….well, help us find a solution, find a place that is willing to try.

But we can’t give up hope, we can’t.

I love the doctor who is on duty today. He’s the first doctor who gave Sam a chance with the CPAP; he wanted to see if Sam could do it. Sam could. The doctor said that he’s increasing the calories in his TPN fluids to try to grow Sam, get him bigger. Thank you! We have to get Sam bigger. Thank you. I also asked him if I could start bringing in fresh breastmilk for Sam, not to have as food, but for mouthcare, to soak q-tips in it, place them in his mouth, let him suck and let the milk be absorbed. He thought it an excellent idea, that there’s great benefit to it. Thank you. Why can’t other doctors think this way? I’m going to make sure he writes an order for it, so that all the nurses will do this. I’ll start bringing in an ounce of milk every couple of days for this. He has a ton there, but it’s all frozen in 2oz sizes….so it would go bad before he could use it all.

I restated my goal with the doctor, that we have to give Sam positive experiences (like the open bed, the music box, etc), that we have to keep him happy and with a strong will to keep fighting. He agrees, he seems to want to give him the chance as well. Hope.