Checkpoints & Quitting Points

We’d like to draw a bit of a mental picture for you, if we could. Tanya and I once hiked Half Dome. Along the way, there is a path called the Mist Trail, earning its name because it passes along the bottom of a waterfall, where heavy winds and mist are constantly bombarding you. Very careful and calculated footing is required here so you don’t fall. Unfortunately, this means your eyes are always on the ground, rather than looking around to enjoy the view. Immediately following is a climb, very much like giant stairs. Some steps are as high as your waist. It’s very tedious and strenuous, especially with a 45lb backpack. It’s not until you reach the top, a checkpoint of sorts, that you lift your eyes and look around and behind you. Looking back at those steps, you’re amazed at how much progress you’ve just made, and how many steps there actually were. It’s totally different than when you’re looking at them one-at-a-time. We “couldn’t see the forest for the trees” to use another analogy.

We’ve done the same thing, figuratively, with Eli. Very soon, Eli will be one year old. As this realization hit us, it was very much like achieving that checkpoint. We’ve started to look back at all the steps and trials we’ve just climbed. Wow, there were a lot! But, standing on every one of those steps are all our friends and family, who have helped us make it over each of those steps. You have all pulled us up each step and helped carry our packs much more than you realize. We’ve been through so much with him, it all starts to blur together, and some even forgotten. In the last week, I’ve gone through our entire blog, our journal, to re-gather up some of the memories that have fallen from our grasp. Just like with the Mist Trail, I find myself thinking “Wow, that’s a lot!” Talk about putting things in perspective.

So, let’s continue hiking, shall we?

Eli had his pacer installed a week ago, and we came home 4 days later. We’ve taken care of his medical needs at home; breathing treatments and pain relief medications. Yesterday, he was supposed to have a follow-up appointment with his surgeon, but he wouldn’t tolerate sitting up in his car seat. Dr. MacDonald rescheduled it for today. Once again, he wouldn’t tolerate sitting up. Dr. MacDonald insisted we find a way to get him up so he could see him, first hand, because this wasn’t normal.

On the trip up to the hospital, Tanya noticed fluid swelling around Eli’s pacer site. This is extremely bad news, and has the potential to be the worst possible news. If there’s an infection around his pacer, he will have to go back into surgery to have it removed, then kept in the hospital for multiple weeks to heal from both the infection and the surgery, then another surgery to have another one re-installed. This blog and our lives have been filled with so many medical explanations and procedures, it’s easy not to flinch at them any longer. But if you take a minute to pause to consider what’s really happening here… it’s so frustrating (such a simple word feels so incredibly inadequate). One minor infection may cause two additional open heart surgeries. The possibilities were enough to finally, FINALLY break Tanya and I down to nothing. We’ve heard so many “You’re so strongs,” but everyone has a break point, and we’ve now seen ours.

Today, I finally cried for the first time since Eli was born. In fact, the first time in many years. We had “that talk” with the doctors, at our prompting. I asked Dr. MacDonald when, in his experience, he has seen most parents finally ask if they’re doing the right thing by fighting so hard for their child’s life. At what point have we poked, pricked, cut and abused his body enough, and it’s time to say “That’s enough?” Is it time to admit we can’t win this battle? Is it time to take him home and let nature take its course?

….

I wish I could put into words what it feels like to reach this point.

….

The extremely abbreviated version of Dr. MacDonald’s reply was “That’s a parent’s decision, not mine. I will support any decision you make. However, I’ve seen a lot worse than this, and kids living relatively normal lives on the other side of the battles.” It was what we needed to hear from someone who sees hundreds of these situations, and completely understands every potential medical hurdle in front of us.

1 Corinthians 10:13 No temptation has seized you except what is common to man. And God is faithful; he will not let you be tempted beyond what you can bear. But when you are tempted, he will also provide a way out so that you can stand up under it.

When we started this blog a year ago, it was partially because we couldn’t find one for ourselves, as we entered this journey. We wanted to know how it affected parents’ and siblings’ lives. We wanted to know about the non-medical parts of the journey, not just about the surgeries and charts. We never found it. We felt led to journal everything here, for families who travel this road behind us. A true look at the real life side of this road. We knew this would require significant transparency on our part, and that’s what this post is about. We began to prepare ourselves to choose to let Eli die.

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The previous was written on Thursday. I’ve decided to keep in intact. Fast forward 3 days to today.

We sat around in waiting rooms for radiology and the lab as Eli’s mood continued to degrade. Insurance red tape is probably killing more people than we want to talk about, but it is not my intent to turn this blog into a political one. We went back to the cardiology clinic, and they admitted us straight into PICU. The X-rays, ultrasounds, blood draws and EKGs were all done within 30 minutes. His white blood count was not elevated, nor did he have an abnormal temperature. These both pointed away from infection, but we had to be absolutely certain. They aspirated the fluid out from the pacer area. It wasn’t puss, nor clear fluid. It was all blood. While that sounds a little shocking, it’s not nearly as bad as it sounds. In fact, we’re all VERY excited to see it wasn’t puss. Puss would mean he’d have that pacer taken out immediately. They called this a hematoma, possibly a broken vessel caused as the pacer settled in, but no concern was shown for specifics. They wrapped him up for a little pressure on the area, and called it “good.”

The blood went to the lab for tests. They found no “bugs.” Everything appears to be OK, but we’re waiting 5 days on bacteria tests, to be 100% certain. We desperately want these cultures to come back negative, because they could still mean pacer removal… but things are looking very positive, otherwise.

Eli remained a little irritable for a couple days, possibly due to a small rash around his feeding tube site, or possibly due to where ever that blood was coming from. Today, he finally made some huge strides. When Tanya walked into the room, he turned his head toward the door, saw her, and smiled as big as ever! She spent the morning playing with him, holding him, watching him smile and hearing him laugh again. In her words “We have our little boy back! I haven’t seen him this happy since before the pacer was installed.”

Please pray for no infection. Please thank God for continuing to use Eli for His glory.