Tuesday, November 29, 2016

Day 2

The number of answered prayers we've witnessed the last day and a half is mind-boggling. And those prayers are sustaining us on day two, when our sweet boy has had to battle. My heart aches for him. The cry of my heart is that God is working to deepen his faith, to make good from this battle. I know He will. Prayer is not just words when you're in the midst of hard. It is everything.
Luke is currently sitting propped up in a chair, which was a big, scary hurdle for him. He is not happily sitting, but he's sitting. In the next hour they are planning to remove his chest tube, which is going to piss him off even more. Even though he knows it is one big step closer to the floor and then home, he is still scared. With good reason. Please continue to pray for his spirit. He is having a sad and mad day. With good reason.

The progress Luke is making is astonishing, especially because both of Luke's other open heart surgeries have been so riddled with complications and setbacks and a slow, slow pace. The nurses keep telling us that a nine-year-old body is so much more able to tolerate the anatomical and physiological changes post-heart surgery. Luke is completely off his IV tree meds, has had his arterial line removed, catheter taken out, and next his chest tube and pacer wires should come out today. The speed of his progress has us on our knees in thanksgiving.

The nurses also keep telling us that days 2 and 3 post-op are the most acute, so we are praying that after tomorrow the Luke spirit we've loved for nine years will start to shine through again. I can't wait to show him text after text and message after message of love and support for him. He is one loved little boy. Thank you.
The word on the street is that we may move out of the ICU and to the cardiac surgical floor tonight. That is a huge step toward home, but at the same time it's hard to leave the cocoon of the ICU. Please pray for a smooth transition and another stable night.

Sunday, November 20, 2016


We survived a long day at the hospital yesterday. Longer hospital days are coming soon, however, so leaving yesterday afternoon for home was like an unspoken reprieve. Our top two priorites the next 8 days are, 1) enjoy our time at home thoroughly and intentionally, and 2) keep this boy healthy. The cardiac nurse practitioner in not so many words told us it would be crazy to send Luke to school next week. She also told Luke studies are finding that iPad use during procedures dramatically decreases the child's perception of pain and discomfort.

She is his new best friend.

And maybe insurance will cover a new iPad for Luke. We have studies, Regence!

Our day consisted of vitals, EKG, a chest X-ray, a lengthy meeting with the surgeon, a blood draw, a subsequent lengthy meeting with the cardiac nurse practitioner, a break for lunch, a visit to the pharmacy to pick up an antibiotic nose gel for the week before surgery, then finally, a consult with anesthesia.

Like we told the surgeon, this heart surgery rodeo is very, very different with a nine year old. Some good differences, some bad. I love that each person we came in contact with yesterday made Luke a part of the process, spoke directly to him, and let him ask any questions he had (not surprising to anyone who knows him that he had a few). That is most definitely a good difference. We have told him repeatedly leading up to this surgery that every nurse and doctor that walks into his room has two priorities: keep Luke as comfortable as possible, and get him home as quickly as possible. I think his interaction with the staff yesterday confirmed that for Luke. I think he trusts that these doctors and nurses have his best in mind. Even when they are asking him to do something really, really hard.

Another lesson relearned yesterday: We can laugh and be silly and those two things make everything seem a little better. Good attitudes really do go a long way.

Here is a bit more information from our surgical consult. And for all you visual learners, these are for you:

This is not an accurate graphic of Luke's heart, but it's a good visual of the DKS procedure that was done as part of his second open-heart surgery, and a good way to visualize where the stenosis is happening. The surgeon will incise the underside of the aorta, widen it, and place a cadaver homograft patch the length of the incision. There is a tiny chance Luke would have enough pericardial tissue to use for the patch, but unlikely. The only downside to the cadaver homograft is that it can increase Luke's antibodies, which would only be an issue if he needed a heart transplant down the road. 

Here is what the repair basically looks like:

Dr. Chen told us it will be about a four hour procedure from start to finish. He will most likely come to the Cardiac ICU intubated but could be extubated within a couple of hours. The average ICU stay is two days and then he'll move to the surgical floor for the rest of his recovery.

I truly enjoyed meeting Dr. Chen. It's rare to meet a heart surgeon who is not only good, but also personable and willing to connect. We spent at least 45 minutes talking after Roger and Luke left the room (also not surprising to anyone who knows me that I had a few questions myself. See note above about Luke's prolific question-asking ability). We are in good hands.

One thing I didn't know (and that we can be specifically praying against) is the high incidence of vocal cord nerve damage (about 15%) that can occur during aorta reconstruction. The laryngeal nerve runs right behind and underneath the aortic arch:

So, we are set for November 28. We have officially begun Mission: Stay Healthy. I may or may not have crossed the line from oil lady to crazy oil lady.

I'm okay with that.

We feel surrounded by so much love and support and we could not be more thankful to walk through this with all of you.


Saturday, November 12, 2016

Not why I wanted to dust off the ol' blog

Many, many times the last two years I've put it on my want-to-do list to post an update on heart and life happenings. And then life kept happening. We continued to see Luke's cardiologist every six months since his last catheterization in 2013, continued to research, seek opinions across the country and then continued living.

Luke has been the dictionary definition of "stable" in this season of blog silence. Stable heart function, stable oxygen saturations, stable med doses. All that stability, though we never took it for granted, definitely shook our knees and hearts with the news that Luke needs open-heart surgery. The shocker was this is not the surgery we have known he'll need since I was pregnant with him.

I'll back up a little to say our second cardiologist, Dr. Kim, moved to Chicago this past summer. We were again left to decide who would care for Luke's heart. In an honest conversation with Dr. Kim, we decided to leave our beloved Tacoma clinic and move Luke's care officially up to Seattle Children's. With Luke being nine and still pre-Fontan — way out on a limb in other words — we felt right about moving his case up to a bigger center.

We met Dr. Rubio in June of this year and felt within the first minutes of meeting him and his nurse that this would be a good fit for our family. A lot was his personality, attention to detail, attention to Luke, and willingness to listen, but we couldn't ignore the fact that he trained at Children's Hospital of Atlanta, with Dr. McConnell, the same doctor I have personally spoken to three times on the phone as we've weighed the risks of delaying the Fontan. He is a leading proponent in this country to let the patient dictate when the Fontan is necessary, not hospital protocol.

At that first appointment with Dr. Rubio, we had talked about a spring catheterization, as that would have been three years since his last one. In what Roger and I figured was simply a fiscal reason, we requested his cath be bumped up to this fall. Who knew God could work even in matters of insurance? ;)

So, that brings us to October 13, and Dr. Rubio's words: "I really wish Luke hadn't surprised me today." And then, "He needs surgery sooner rather than later."

So what is his heart requiring on November 28? The root of his aorta, where, during his second open heart surgery, was connected to his pulmonary aorta, has developed scarring. This scarring down has created a narrowing, or stenosis, and his pressure gradient across the stenosis is 22 points. If a heart healthy person had that pressure gradient, they would be sent home and monitored. Surgery isn't even on the table until that gradient typically hits 50 points or more. But, of course, Luke's heart is far from normal. Even mild stenosis working against a single ventricle can have detrimental effects. It was seen through his catheterization a few weeks ago that the filling pressure of his left (and only) ventricle has jumped from 8 back in 2014 to now 16 mmHg. That means his heart is not relaxing as well as it was and there is some diastolic dysfunction happening.

The deeper you walk into the medical world, the more you learn that medicine does not equal exact science. Could we do the Fontan at the same time as the aorta reconstruction? Yes. Would some doctors argue this is what should be done? Yes. But after much (and I mean much) weighing, wrestling, and discussion between our old and new cardiologist, between us and both cardiologists, and among the 30 doctors who conferenced on his case, it was agreed that Luke does not warrant the Fontan at this time and to keep the two surgeries separate is the way to go. And here is why:
  1. Luke's filling pressure and pulmonary pressures are currently elevated. This is most likely due to the stenosis, but whatever the reason, these numbers now put him in a high-risk Fontan category.
  2. The theory and hope (and prayer!) is that reconstruction of the aorta will cause these numbers to go back to Luke's baseline within a year, making the Fontan recovery less risky. There is direct correlation between high pulmonary pressures and length of ICU stay, hospital stay, chest tube drainage, and even Fontan failure.
  3. Most of all, it just feels incredibly unsettling to send your child into a surgery when he is a sub-optimal candidate for that surgery. We would rather have two open heart surgeries to face that are less risky than one that is high risk.
That leads us to today. We are just about two weeks away from Luke's third open-heart surgery. Luke has handled the news in kind of a mind-boggling way. How a boy of nine can absorb the news, process it, ask questions, begin to find some good in it (new iPad! Dad and Mom waiting on you hand and foot!) and continue to live life without a whole lot of anxiety, is just crazy to me. But, I kinda know his response has less to do with Luke and more to do with God. Our God who tells me, "I Am." We are clinging fast to this promise. There's a lot we don't know about this surgery and recovery, but this we know. He Is.