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.

__________________

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.

Smiling

Smiles today!

Pacemaker Recovery

Last night, Eli was in the same medical state as the night of his surgery. He was still on sedatives, heavy diuretics, had significant edema (fluid swelling) and his canula was still feeding a full 6L/hr of air. As we left for the night, we began emotionally bracing for a very long stay, realizing an additional week or two might be realistic.

This morning, we decided to head home for the morning to spend time with Paige. It was a great morning of hugs, kisses and laughter. We've missed her so badly, and it was obvious she was missing us, too. She's been having lots of fun with grandmas, but it's been 5 days since we've seen her in person. We ate lunch together, read books together, and had lots of real-life contact with our favorite little girl. As we tucked her in for her nap, we explained we were heading back to the hospital and maybe we could talk to her "on the computer" (webcam/Skype). She started to cry a little, but we made it through. As I write this, we're waiting for her to wake up from her nap so we can show her Eli. Yesterday when we talked to her on the phone, her first question was "How is Eli doing?" She's an awesome big sister.

Now, we're sitting in Eli's room again. We're so excited to let you all know, he made huge strides today while we were gone! He's only had one sedative dose today, and they're trying to hold those back as much as possible. He's on all the same medications as home, now. He's on standard feeds, just like at home, and his air is all the way down to 2L/hour! High flow only goes down to 1L/hour, so he'll be back to "normal" shortly, if he stays on this schedule!

He was awake and alert when we got here. He grabbed at our faces and very obviously interested in us more than anything else. He's still a little groggy, but you could see hints of a smile when we played with him.

Here he is, within the last hour.

Pacemaker Installed

Eli had his pacemaker installed yesterday. Surgery went very well! He's in the PICU recovering now, while we're at the Ronald McDonald House enduring a little down time during shift change.

What did yesterday look like for the non-patients? Well... we woke up at 4am, after staying up past midnight because we couldn't sleep. We made some of the strongest coffee we've ever made. We really love our new coffee maker! It's the thermal mug type, so there's no burner under the pot and the coffee never tastes burnt. It's just so much smoother. Anyway... then we hit the road with our little red head.

5:30- Arrive. Sign in.
5:45- Go through all the normal pre-op stuff: Weight, height, when did you feed last, etc.
6:15- Got our pre-op room. New nurse asked all the same questions.
6:45- Met with anesthesiologist, Dr. Greaves. Asked all the same questions again.
7:00- Met with surgeon, Dr. MacDonald. This is the same surgeon who did his first surgery. We admire/respect him immensely. He told us it would be 2 hours after entering the OR before he was needed because they'll be setting up arterial lines, IVs, etc. He was noticeably relaxed. He had just come in from his morning swim. 2 miles!
7:30- We prayed over our little boy, and they wheeled him out. He smiled at us.
7:31- We stayed in the room a while, cried and held each other. It was so much harder to let him go this time. For his first surgery, he was 40 hours old, and we'd never even held him. He's 11 months now, and we've laughed with him in our home.
7:45- Breakfast in the cafeteria. CHCC's cafeteria is really great, for a cafeteria.
8:00- Searching to find a comfortable place to "crash" for a few hours. The basement has a couple areas that are very light on traffic and very far away from the main entrance, where all the people with coughs/colds wait. Once we settle in, Tanya naps while I burn up the batteries on the laptop.
9:30- First phone call. All the lines are in, incision started. Everything's well.
10:00- Restless and laptop batteries are low. We stroll casually through the halls.
10:45- PICU waiting room is too crowded. NICU waiting room has no Internet access, but we watch the last half of "California's Gold" with Huell Howser. If you don't know who he is, you should! Unintentional stand-up comedy.
11:00- Settle into an admin corridor, directly above the main entrance. Maintenance staff is working on ladders above the ceiling. Fire alarm goes off. This happened during his last surgery, too. I feel like I'm at work again. Listening to their radios, we find out it came from the construction area. Again. I have a little empathy for them. :)
11:30- Second call. "We're all done! Meet us in recovery." Recovery? Does that mean they extubated?
12:00- Third call. "Sorry, he's fighting extubation a little, so he'll go straight to PICU instead." That's what we thought was supposed to happen the whole time.
12:15- Meet with Dr. MacDonald. Everything went well. No problems!
1:00- Finally get in to see our little boy. He looks so tired. Still sedated and intubated, but wiggling around, and keeps rubbing at the breathing tube.
1:30- We watch them extubate him. Pretty simple, but he's stuffed up. They hold a mask over his face for a few seconds until... he cries! Hooray!
3:00- They step him up from a regular canula to a high-flow canula. He has some upper airway swelling and could use a little assistance sucking that air in.
4:00- We leave to get food. We force ourselves to leave the campus and go to Macaroni Grill. Dr. MacDonald encourages us to do so. Honey balsamic chicken for me, chicken parmagiana for Tanya.
5:30- Check in to Ronald McDonald House. The (lack of) Hospitality Team is so incredibly inefficient. Rock music is playing over the speakers through the hall way. It's a little disheartening that it appears they've lost their focus as to why they're there. I know it's a work environment for them, but it's supposed to be a temporary landing pad for parents in crisis. A peaceful "safe" place. Oh well, we're all human. Just get me my key, we don't need the tour, again.
5:45- Walk back over to sit with Eli.
7:00- Shift change. We have to leave for an hour. Just then, a friend calls to offer company. He meets us in the cafeteria and we drink hot chocolates and enjoy friendship.
8:00- Back to Eli's room. We're beginning to be able to calm him now. I rub my fingers over his eye brows to keep him resting. He had become agitated while we were out. All his kicking nearly pulled out his arterial line (his only IV, and also used to constantly read blood pressure). A little mommy-sedatives helped to keep the medical sedatives to a minimum.
10:00- Getting ready to head to bed. It's been a long day. Just as we do so, Eli quickly turns WAY blue. His oxygen saturation monitor isn't working, either, so we don't know where he is. The nurse begins scrambling to figure out what's wrong. 2 more nurses come in and start figuring out what's wrong with the saturation probe. Respiratory therapist comes in and starts tweaking his air feed, blasting him with straight oxygen. He's pink again, but that was a scary 45 seconds, and they still don't know what's wrong with the probe. Electronics-tech-daddy sees the probe doesn't appear to be getting power and asks them to check where it's plugged into the main monitor. Tada!
10:15- Nerves settled back down... try to head out again. Eli is sleeping peacefully. Why the little event? We don't know.
11:00- I'm not sure what happened at 11. We never quite saw the clock reach that point.

Today, Eli continues to make progress. His swelling is already decreasing and his breathing troubles are beginning to ease. His cardiologist, Dr. Heragu, came in and verified Eli's pacer is doing what it should, and the vendor, Medtronic, trained us on the monitor we'll be taking home so we can download the information out of his pacer and send it to them via phone line. We'll do this once per month.

Here's Eli's latest. Last night, after surgery. He only has one IV, the red line coming up over his belly. The rest are EKG stickies and his pacifier tether.

Pacemaker Rescheduled

We have received a one-week delay for Eli's pacemaker installation. Red tape is awesome. Apparently, our insurance doesn't think our surgeon is on their approved list, and the red tape involved may not be complete by tomorrow's intended surgery, so in our surgeon's words "Today, or a week from today won't make a hill of beans of a difference for Eli. Let's just wait until next week, rather than overload you with all sorts of medical bills so you can fight insurance to prove they need to pay them, anyway."

So... next week. Same schedule. Tuesday pre-op labs, Wednesday surgery.

Pacemaker Implantation

Eli was on a 24-hour heart monitor recently. It verified what was already assumed: his heart's electrical system isn't functioning properly. His heart's chambers are out of sync with each other, making his already compromised heart much less efficient than it should be. In addition, his heart rate is always much lower than it should be, dangerously low at night. Typically, kids at his age should have a heart rate averaging 120-160 bpm, but he averages about 80 bpm and only reached 110bpm when extremely angry. In very heavy sleep, his heart rate will even fall into the mid 50 beats per minute area.

Wednesday, Eli is having a pacemaker installed. This is a permanent alteration, and will be with him the rest of his life. It will help synchronize his heart's chambers and bring his heart rate to a safer level.

We're expecting a 2-night stay at Children's Hospital, and hopefully back home by the end of the week, should everything go well. We'll share more details as we know them. Please continue to pray as faithfully as you always have.