Witnessing a Miracle

We had quite the scare 2 nights ago. Eli's condition continued to worsen. His breathing looked like a severe asthma attack, gasping and choking for each breath, then coughing with each exhalation. Excruciating to watch, we called our pediatrician to verify taking Eli to the ER was the proper choice. He agreed. We expected a trip back into the ICU and intubation to control breathing. We began to pack some clothes, knowing we were staying the night.

Out of shear desperation, we decided it was time to pray. Literally fall to our hands and knees over Eli, and beg God to spare his life. As we prayed, Eli stopped wheezing, and started singing! When we opened our eyes, he was looking right at us with a huge smile, and breathing smoothly. We had to turn down his oxygen feed, because he was bumping off the high end of where we want his blood oxygen saturation to be! In a matter of seconds was a complete turnaround in his health.

We never left the house that night. As I began to process the experience, I became a little frustrated with myself. I wrote that night:

I wish my own maturity and discipline didn't require such drastic measures. For a second time, I recognize the need to be bold and vocal with my faith. This isn't comfortable for me. Praise be to Jesus, who has given me everything I have, and taken away what I don't need.

Very shortly after all this had happened, I got a phone call from Pastor Jim. He informed me there was a business meeting at the church that night, and at the exact minute we were praying, the 50+ members at the meeting decided to pray for Eli, as well! I was beginning to see the evidence of God's direct intervention that night. It took friends' realizations for me to completely open my eyes to the fact that we had just witnessed a real-life, Biblical-style, body healing miracle.

I later shared a realization with one of those friends, "I can't believe how blind we are to God's work. We read stories of miraculous instantaneous healing in the Bible, and wonder why God doesn't work that way any more." In our hearts, we know he does, but living strictly by faith can be so challenging at time. That night, we experienced it for ourselves, firsthand. Not someone else's inspiring, slightly unbelievable story, but our own.

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Fast forward back to today. Eli's in much better condition, now. He's still a little mucky down in there, and occasional coughs are productive. He's still getting loaded up with medicines pretty heavily. He gets nasal spray on occasion to relieve sinus pressure, and saline drops and suction to help remove the snot. We're using a nebulizer to give him budesonide (a steroid to help dry out the fluids) and Xopenex (a bronchial dilator), but have pulled back on the Xopenex, lately. All these drugs sure dry him out. We get a kick out of the video below, because you can see the effects of his dry mouth, he sucks on his lips. It makes us laugh.

Paige is staying with friends one more night. She'll come home tomorrow. It looks like she's over her cold, and her voice is coming back. We've missed her desperately, but are SO THANKFUL for those who have risked (and given up) their own health in order to protect Eli. Home life will be a little different for us now. Antibecterial soaps, wipes and sanitizing gel are now standard procedure. At work, I isolate myself from people as much as possible. I don't let anyone ride in my vehicle any more. We're hearing about so many friends who are getting sick, all over the nation. 'Tis the season, I guess. We've decided to hunker down, become shut-ins, and try to make it through this fall and winter as unscathed as possible. We'll write more on that, at another time.

For now, praise our Lord, Savior, Healer and Provider Jesus for giving us such a bold miracle in such simple terms that even we could see it. Here's Eli, tonight:

Giving the Doctor a Look-See

Eli's cold continues to worsen. He's constantly coughing and wheezing. Each breath is so snotty it makes me want to blow my own nose. One of the benefits of our new pediatrician is having his cell number. We called him, and he offered to meet us at his office today.

I hate to beat a head horse, but the severity of the situation doesn't always seem to register. When we receive comments like "You can't live your life worrying about every little sniffle," or "At least it's just a head cold," it's very difficult to hear, and so extremely insensitive. A little sniffle or "just a head cold" is literally life threatening to Eli. He's that fragile, especially when it comes to pulmonary function. Please recognize what a dark road we're traveling right now. I'm sorry to be so direct and rude, but while nearly everyone has been great support, some tiny, well-intended dagger wounds have really begun to fester.

Please pray that he maintains his strength to fight this.
Please pray that this isn't doing further damage to his lungs, which have already failed one cath lab test.

As I type this, he continues his raspy cough. And smiles.


UPDATE: Our pediatrician gave us a bunch of respiratory drugs and a nebulizer. We also got a prescription for antibiotics. We're making every effort we can to stay in front of pneumonia. Eli's reacting well to the treatments, but there's definitely some junk built up inside those lungs already.

Singing Eli

Eli is becoming very vocal and sings often. We've also noticed that he sings more when Paige is not around. Maybe it's because he can actually get a word in! This video was taken today. He is singing and smiling through his congestion and cough. What a happy boy!

Fighting a Head Cold

Last week, I (Jason) picked up a small head cold. It was nothing notable, it never even slowed me down. I never really developed a runny nose, and never coughed more than about 4-5 times. A couple days ago, it became apparent Paige had picked it up, as well. Although it's also not slowing her down a step, she definitely has a runny nose, a small cough, and has what we call "her funny voice."

We've been making every effort we can to isolate Eli from all of this, but how can you in a 1300 sq/ft home? We tried sequestering her in her room with movies (Thank you Nanna for the portable DVD player). Then we asked for help from friends willing to take a mildly sick child into their home. Thank you so much to those who've already helped. This weekend, Paige is staying with Nanna for the whole weekend, and this is an incredible gift to us, and especially Eli.

I'm writing because Eli is starting to show signs of being effected by this cold. His cough is a little wet, and his breathing is a little... snotty. All of Eli's immediate health concerns are based around the capability of his lungs. If this cough makes it into his lungs, it is very realistic to expect he may make it back into the ICU.

Please pray for protection and healing for Eli, and especially his lungs.

As a side note, we've come to recognize how rarely the blog is updated any longer. We're going to make efforts to resolve that.

Morro Bay 2009

This weekend, the four of us got the spend the weekend camping in Nanna and Nanno's trailer at El Chorro campground, just south of Morro Bay. A 3 day/2 night getaway was long overdue. We decided to make this entry a photo book. Family dinners, swings, 8:00am s'mores, downtown shopping, watching a sunset on the beach, and so much more.

This was the best weekend we've ever had with Eli. That boy loves the coast! He barely slept all weekend, and never fussed, either. Just like Paige, if there's something to see, he'll take it in. He smiled more than we've ever seen him smile. He required less oxygen support than he's ever needed. Often times, we even had to turn his air off.

Lights and Tunnels

Eli had his cath lab procedure yesterday afternoon. We are happy to report that his recovery was quick and he is already home. The reason for the procedure was to measure blood pressure inside the heart and lungs, to know whether Eli’s lungs would be sufficient enough to make him eligible for the next heart surgery, the Glenn.

Here’s a little refresher course on his cardiac anatomy. Our hearts function in something like a figure-8 fashion (or 4-cycle engine). Blood flow is heart>lungs>heart>body. Eli’s left ventricle, which pumps to the body, is too small (hypoplastic left heart. Hypo= small, plastic= construction), so the solution is to step away from figure-8 and think more along the lines of a single lap through the body (or 2-cycle engine). Here’s a visual of our anatomy, and what his needs to be (click to enlarge).Hopefully, you can see that, for Eli, the heart pumps through the entire body, then the blood flows passively through the lungs and drains back into the heart. For this to work, the vascular system inside the lungs needs to be very open and free, otherwise the heart will not be able to push blood through the lungs after already making a trip through the entire body. Hence, the cath lab procedure: to test if the lungs are “free” enough, sufficient enough, for this to work.

With completely broken hearts of our own, we have learned that his lungs are not sufficient.

As things currently stand, Eli is not a candidate for the Glenn procedure. This leaves us with two options. One option is an entire heart/lung transplant. This would relocate our entire lives to Stanford, should a matching double-donor be found in time. Eli would be dependent on anti-rejection drugs, and be forced to live in a bubble (figuratively) the rest of his life. We believe it is extremely realistic to expect that to be a relatively short life, regardless. Tanya and I have already ruled this option out. The hardships it creates on each one of us, and the complete lack of a quality of life for Eli just makes this a path not worth traveling, in our eyes.

The second option is, for lack of better term, controversial. Eli would be started on a drug called Sildenafil to treat pulmonary arterial hypertension. That is, it would dilate the arteries in the lungs, allowing them to flow more freely. The debate comes in whether this is a long term solution, or not. The reality for us is that it’s the ONLY solution we might have.

Eli’s already been through the first stage heart surgery, which is intended as a hold-over until he’s stronger and ready for the second stage. Eli is tolerating his current cardiac status longer/better than most, so we have an unusually longer period of time before the Glenn is required. As we understand it, we will be able to use this time to try this drug for a while, and take another run at yesterday’s procedure a few weeks from now. Should conditions remain the same at that time, we will surrender to the path of compassionate care: taking him home and enjoying him while we have him.

So, now we are headed down a tunnel with only one door. We hope and pray, with the darkest outlook we’ve ever had, that the door will be open this next time, when we get there.

Plead/pray/beg God that our original prayer still holds worth: That Eli would show the doctors a miracle they couldn't explain.
Continue prayer that God is glorified through this journey.
Pray for the clarity and understanding for us. We believe this journey was orchestrated to change us, mature us... something. Since that doesn't seem to have happened, we don't understand what's God's doing. We trust Him completely, but can't believe the possibility this story is already coming to an end, yet.

Cath Lab Procedure

First, we need to apologize. We've totally dropped the ball, and haven't let everyone know Eli has another procedure this morning (Monday). So here's an update begging for the continued prayer support you've all given so faithfully up to this point.

Today, Eli goes into the cath lab and they're going to send a probe up into his lungs to measure blood pressure and flow inside the lungs directly. This is a general anaesthesia procedure with intubation, and standard practice is to keep the patient overnight in the hospital, afterward. The doctors have already teased that, with Eli, it will probably be a couple days, given his history. And... they're not really joking. That's probably realistic. This test is to make sure Eli's lungs are even going to be capable of handling his stage 2 heart surgery, called the "Glenn." We're hoping and praying, with all that we have left in us, that his lungs will be OK. If not... his story turns very grim.

We've typically used the blog to mobilize prayer, but have totally dropped the ball, lately. Life's been such a tornado, as we adjust to Eli's needs at home: keeping track of his meds, sleeping, eating, transport, doctor's appointments (he's had 8 in the last 3 weeks), general attention, and so on, all while maintaining Paige's normal life, at the same time. As a side note, Paige has been an amazing big sister, helping whenever she can. She's so proud of having a little brother, she always introduces him to everyone wherever we go.

Please pray for his lungs to be sufficient, and his recovery to be speedy. Please also pray that he doesn't "catch" anything during his return visit to the hospital.