How Far We’ve Come

I have made a commitment to limit how much of Liam’s personal information I share publicly. Because of this I’m trying to balance important and helpful information for those parents and adults who follow my blog and social media because they’ve benefited from me sharing our experiences.  At least 6 times a year, sometimes more, I get a heartfelt thank you from a stranger who felt less alone after reading about our family’s journey, and it reminds me that while privacy is important, we are also part of a collective that is often starved for information and emotional honesty on the topic of raising a child with a chronic and potentially lethal condition.

So, I’m going to tell you a couple of things about Liam’s procedure today and some funny things. Then I’m going to tell you a less funny thing. Then I’m going to tell you how it feels to be in this chair literally looking at a toilet because it’s in the middle of Liam’s room right next to the standard-issue-reclining-hospital-mom-chair from which I write.

Liam had a stent placed in his left pulmonary artery back in 2008, and it was ballooned opened larger today. There were difficulties with the stent when it was originally placed  so little tears were made to it to prevent lasting damage to the lung. However, those little tears could not be safely opened further today, though they would have preferred to it wasn’t worth the risk. Still, opening the larger part of the stent is increasing his blood flow to his lung.

More good news is that when they ballooned open his right pulmonary artery in 2008, unlike the left it stayed open and is looking good. This is huge considering he was potentially not a candidate for the Fontan ten years ago because of his hypoplastic pulmonary arteries.  Happily and surprisingly, Liam has not grown a significant number of collateral veins since his last procedure in 2008, so that was not an issue today though we expected it might be. The doctors test occluded (blocked) his fenestration (intentional surgically created hole between his heart and circulatory system) but it yielded no benefit. So it remains open, which did not surprise me at all.

Great news continued with good pressures in his heart, lungs, and liver. This is all excellent given his age and what those good pressures mean for the longevity of his current good overall health.

The new and not so great news is that Liam has developed some considerable pulmonary arteriovenous malformation (AVM) growth. Yeah, Google pulmonary arteriovenous malformation and when it only brings up scholarly articles you get to see what it’s like to have a kid with rare and potentially lethal medical problems. For now these things are like weeds they don’t want to pull because they might grow back bigger and stronger, but they (like the collaterals before them) are dumping dirty blood into the clean and causing Liam to be blue with long term low saturations. This is why the fenestration test occlusion made no difference. The AVMs are undermining his reconstructed circulatory system.

The answer to this problem is not obvious because it’s premature to assume we know the extent or long term effect, but a change of altitude may be in Liam’s very long term (not immediate) future. However, before we even seriously consider that drastic a move, we need to know if it would truly benefit Liam’s health and much more research and second opinions would be necessary. We know it’s not good, but we don’t know if it’s actionable. Currently it’s just on our radar for now.

The best news of the day was that the radiologist was able to follow the cath doctor into Liam’s body and get a liver biopsy sample from the inside out. This is great news because it means we’ve avoided a second surgery and general anesthesia tomorrow! This is a huge relief not only to us but especially to Liam. Here is where I draw the line between his privacy and my obligation to inform. Let’s just say he had a lot of anxiety. If other heart parents want to talk about this issue and my advice personally, you can contact me through my web site “contact” link or on Facebook.

I will tell you one funny Liam story though, because it’s not private and it is precious. He kept asking me how many cells the liver doctor was going to take in the biopsy, and I told him he’d have to ask the doctor. At one point he asked the anesthesiologist, but that was a radiologist question. Liam then asked if they were going to clone him! He was back in the cath lab before I saw the radiologist, so I asked him Liam’s question not knowing why the number of cells was so important, but that Liam wanted to know. The radiologist explained the size of the core sample but couldn’t give a cell count.

Well, when Liam woke up, me telling him two centimeters and a little narrower than your IV tube was insufficient.  He wanted to know the exact number of cells so he knew how many clones they could make from him and if it was enough for a clone army (he was very sedated), but the question came up yesterday when he was perfectly alert. So, who knows what kids are thinking? I know Liam’s imagination is fully intact as was his strong spirit, and I’m so proud of him.

The less funny part of today was when I was all alone for two hours waiting for Jim, Jenny, and Moira. I’ve been alone with Jim during Liam’s many surgeries, but never all alone. This is no one’s fault. We didn’t know when his procedure would start and were expecting it to be at 1:00 pm, but it actually started before 11:00 am. So, I was by myself in the waiting room, and all around me were clusters of supportive families. I was OK until the clusters of families started taking the chairs near me, one by one, and dragging them to their little clusters, so that I was left on my seat with one chair next to me. I put my wallet on it because if someone took that one chair I wasn’t going to be OK. I knew my people were coming.

The thing was though, I wasn’t alone. All around me were versions of me. 29 year old postpartum me waiting for Liam during his first surgery. 30 year old postpartum me who left her baby girl at home to bring Liam to another cath. There was the me whose 32nd birthday arrived eleven days after nearly losing Liam for a third time, that me waited long into the night not knowing what was happening to her son who was not yet three. Then there was me circa 2008, age 34, watching Liam bleed out, watching a tiny nurse in scrubs throw her body and a sandbag down to stop the blood at his cath entry site. That same me took Liam to kindergarten just days later.

All of these younger incarnations were with me today as I sat criss-cross-applesauce on a bench watching a strange game of musical chairs where one by one they were taken away leaving just me and the ghosts of myself, and I cried. I cried without a big glass of sangria. I cried without the privacy of a loud shower. I cried in public in front of large groups of people, and I am proud of the me I was and the me I am, because I am so strong. One of the strongest things I’ve ever done is let my forty-year-old-self cry like a baby and not give one shit what people thought of me.

I know that this is not the end of our journey. I know that this good news will keep a long time and taste like sweet honey, but I also know that it will also not last forever. Today I saw amazing things including huge leaps in technology and treatment since we were last here in 2008. I’ve glimpsed the future of the fight against CHD, and it’s promising and hopeful. I also felt like I really was part of making that happen through my advocacy and charitable work, which makes me feel good, but not half as good as I feel about how far I have come personally.

Today, when I was strong enough to sit alone and cry without shame, I put the past to rest in a way I’ve been unable to do for twelve years. Those two hours alone were like an exorcism where sitting in my silence during my child’s 13th surgery released twelve other versions of me and let them see that we are all going to be OK.

6 Comments »

  1. Hi Amanda

    I hope you guys are ok. The weird thing is, I get your updates on very significant days in my own journey with our Daniel who is now 16mths old (today)!!! We were back in Sydney for the day today, another surgeon and another appt for 2-3days in the slammer for our little man to check out his respiratory system and do some exploring.

    The CHD battle continues for so many all around this world every single day. Thanks for your updates and continuing your journey with your precious boy as I said, I hope you guys are all ok.

    I am proud of you for having that cry … well done to you. Hang in there and keep up the posts.

    Libby and gang

    x

  2. So moved by your tender strength and capacity to reflect and love the other versions of you while you care for your children.

  3. I’m so glad to hear the positive reports on Liam! What a powerful experience to process the past and let it go. By the way I was praying for you around 11 yesterday. Perhaps you weren’t completely alone…

  4. I’m so glad to hear the positive reports about Liam! And what a powerful experience for you to process the past and let it go. By the way, I was praying for you around 11 yesterday. Perhaps you weren’t completely alone…

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