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.

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11 thoughts on “Hope is a funny thing

  1. Just catching up – sorry you are having such a rough time. You are such a great advocate for Sam, both in terms of seeking out information and working with the docs and about his developmental care and quality of life. I don’t know much about cardiology (just had a mild case of pulmonary hypertension to deal with), but I have heard fabulous, fabulous things about the cardiologists at the children’s hospital in Boston. I hope you can at least get a consult with them. I’ll be thinking about all of you guys!

  2. I got up a lot in the night because of Katherine’s diabetes (no emergency, just lots of checks) and Sam would be first on my mind every time I woke. I am asking lots of praying friends to pray for him (and when we were out last night a number of people were asking “how’s Sam?”). I am asking God to “navigate” Sam and you guys through every obstacle and crisis to the other side of all this. I am also asking that he just plain old heal those veins.

    In terms of helping you find a solution, what would that look like? What would someone need to do? I did some google searches and I saw the chemo study you mentioned, but nothing much else. I searched to see if Great Ormand Street hospital in London had done anything (they’re known to be cutting edge) but I didn’t find anything.

    • Paul, the challenge is that there’s not much information out there as the disease is rare. Some studies trying to figure out the cause, nothing really for treatment. We’re probably going to have to find something very cutting ege, slightly alternative. Especially since almost no treatment with Sam has been ‘clinical’ or ‘typical’.

  3. jamie says:

    I am on the hunt for you. I found this so far..

    For more information about pediatric heart-related services, please contact the Heart Institute at Cincinnati Children’s Hospital Medical Center through email (thc@cchmc.org) or by calling the Division of Cardiology, 513-636-4432, or the Division of Cardiothoracic Surgery, 513-636-4770.

    I read about the PVS on their site and they seem to be the front runner for treatment and the outlook is good. Couldn’t hurt to call. I will keep searching. I have followed your story from FF to here and I check daily for updates. (sometimes 2-3 times a day)

  4. jamie says:

    This one was voted best pediatric cardiac doctor in Cinncinati and in America in 2010. Here’s her contact info..

    Department:
    Pediatric Cardiology
    Location:
    Cleveland Clinic Main Campus
    Mail Code M41
    9500 Euclid Avenue
    Cleveland, OH 44195
    Work
    Appointment:
    (216) 445-3865

  5. jamie says:

    This hospital in Boston is doing the chemo drugs for treatment.

    To schedule an appointment, call 617-355-2079 or email pvs@cardio.chboston.org.

    To talk to one of our physician or nurse representatives or for general administrative questions, please call 617-919-2934 or email pvs@cardio.chboston.org.

    Please call or e-mail us anytime. We will respond to e-mails within one business day.

  6. jamie says:

    By the way, if you need anymore help researching, please feel free to call me. I’m Jamie and I’d be MORE than happy to help you do anything you need to get your little Sam better. Text, call, anytime, day or night.. 816-213-2505. I will keep looking.

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