Friday, October 23, 2009

How can we help?

Over the last few months, you’ve all been so very supportive. It would be impossible to count up all the offers for help you’ve given. And you all know how poorly we’ve been able to receive help. The problem is that we usually just don’t know what would help us. Or, more recently, our needs for quarantine have isolated us from being able to receive help. This week, we’ve discovered an area where we could use your help.

The further we make our way through this journey, we become more drained and lose sight of any goal. It feels a bit like a fog of war. We can’t see what’s ahead of us, and we’re forgetting why we’re out here. We are only able to put our heads down and continue marching., watching only our feet as they put down one step at a time. We trust, with all our heart, that God has a master plan at work. We also feel that’s such an abused cliché, often used to blanket all sorts of confusions, but it’s something we’ve latched onto for a year now. It’s been a year since we learned about what was to come with Eli.

We’d like to call on you to help remind us of the victories that have come through Eli’s story. Victories on any level from causing a smile or tear, to changing a life, to anything in between. Quick thoughts to full stories, we need them all. We still remember some of them. Stories of faiths renewed, stories of parents re-evaluating how they’ve taken their own children for granted, stories of families and children praying together for Eli. All these sorts of things give us strength to continue fighting.

In the Bible, there is a story about Moses, and his role in the battle of the Amalekites (Exodus 17). His job was to hold up his hands. When his hands were up, the Isrealites would be victorious. As he lowered them, they’d suffer loss. When he could no longer lift them, Aaron and Hur came along side him and held his hands up for him. We need your help holding up our hands.

We know there are many more following this blog than have ever written. We know there are some of you we’ve never met, who are following us faithfully. It would mean so much to us for you to communicate any encouragement to us. We’ve tried to share our lives as best we can, could you share yours? We’d love for you to share your stories here, so others can also be encouraged, but we recognize there are many reasons you may prefer not to do this. Lots of us don’t like speaking publicly. Many of us don’t want to spend the time to deal with the technology issues related to posting here. For whatever reason, we offer the alternative of emailing us directly at

Thank you for continuing to walk with us. We eagerly await for your stories, and appreciate you taking them time to write them.

Thursday, October 15, 2009

Fall Pictures

Eli likes both sweet potatoes and grandma Ruth. Paige is both an artist and a super hero. We just thought we'd share some of our autumn, so far.

Tuesday, October 13, 2009

Cath Lab 2 Report

Yesterday was Eli's second chance to see if he is eligible for the next phase of his surgery journey, the Glenn. We need blood pressure in the lungs to be low enough before we can proceed. He failed this test in July, so we gave him some time to grow into his anatomy, then tried it again.

Eli's lungs are still not sufficient. He still has pulmonary hypertension, the blood pressure in the lungs is too high. We need the blood pressure in the lungs to be 1/3rd (33%) of what it is in the rest of the body. At the first test, it was roughly 58%, but measurements were hard to obtain because his numbers were so erratic at that time. For yesterday's test, everything was much more stable, but pulmonary pressure was still in the 44% area. The positive side is that he's made signifcant progress, cutting the gap in half. He is, indeed, growing into his anatomy.

This test also verified, with certainty, what we have for months thought to be the case. During his first surgery, the band around Eli's pulmonary artery was not installed tightly enough. This band is used to reduce bloodflow from the heart into the lungs. It obviously has direct influence over the blood pressure in his lungs. It is adjusted by watching blood oxygen levels as it is tightened. Hind sight tells us that Eli's blood flow and direction is so chaotic, the numbers they used to adjust the band were not accurate. Technically, they could tighten the band, but this would require surgery, opening him all the way up to tighten the band. The alternative is to wait, and let him grow. The band will stay the same size, and he will grow larger, making the band relatively smaller. This is obviously a MUCH less invasive path, and the obvious choice.

So what now? Now, we wait and grow some more. We'll test again in a few months, but any specific timeline has not been established. Our cardiology appointments have been reduced to every 2 or 3 months, rather than monthly. Eli doesn't have any pressing issues at this time, so there's no need for such close monitoring. Our job is to keep him healthy, because any cold/flu would still be extremely bad for his sensitive lungs. We will continue to stay shut-ins through this nasty winter. Christmas and the holidays will be quiet and a little lonely for us this year. We look forward to a return to social life sometime next year.

So to the positive notes. The procedure itself went very well. We didn't even need to stay the night! Eli was... sit down before this hits you... AHEAD of schedule! They let him go home with us after a few hours in the recovery unit. This was such a huge relief because it meant that not only could we sleep in our own beds, but Eli would not be cared for by a nurse who was also caring for 3-6 other sick patients.

In addition, he was also sent home with a slight fever, which they don't normally do. While the fever is now gone, it was very encouraging to be told that he was being sent home with us because we've cared for him so well and understand everything better than other parents. The doctor made it clear to us that he trusted us with Eli's sensitive care, which is why we were sent home before we should have been. Earlier that day, his anesthsiologist asked us some specific detailed questions about Eli, which Tanya was able to answer. As he walked away, we heard him tell the other team members, "It sure is nice to work with parents who just know." Later, in recovery, we heard the charge nurse say "Just ask the parents. They're experts with Eli."

Am I bragging? Yes. I have an awesome wife, and Eli has an extraordinary advocate. Tanya's never second best at anything she wants to do, and Eli's care is a perfect example. I am extremely proud of her, and glad to have her as my partner through this journey.

Please pray for continued health for us all, especially Eli. Pray for protection from what has already been identified as a terrible flu season. And pray for Eli to grow, grow, grow! We continue to be humbled by everyone's outpouring of support, and could never thank you enough.

Thursday, October 1, 2009

Cath Lab, Take 2

In July, Eli failed his heart cath. Blood pressure was too high in his lungs. The plan of action was to give Eli a chance to "grow out of it." We were told to expect 3-6 months after the failed cath lab before we tested again. 2 weeks ago, his cardiologist used an echocardiogram (advanced ultrasound) to get a rough idea of how his lungs might be progressing, in regard to the high blood pressure. While not nearly as accurate as a full cath lab excursion, the echo still offers decent insight. After the echo, our cardiologist informed us Eli's numbers were indeed moving in the right direction.

Our cardiologist is the ultimate pessimist. He has a habit of immediately jumping to ultimate terrible possibilities, and doesn't seem to be able to acknowledge the optimistic. As an example, we once told him that we were running a HEPA filter 24/7, and he replied by offering that even HEPA filters aren't proven to be anything more than marketing. I wanted to suggest that if he would lick the dirty filter we brought to the next visit, I'd believe him. But, I held my smart mouth. When Eli had issues with unstable body temperatures, he immediately jumped to possible spinal tap testing, while every other medical professional showed little concern. When he saw the amount of diuretic Eli was receiving, he warned us it could cause deafness. As we spoke with other medical professionals, we were told this is true, given in ultra high doses via IV, but we should have no worries with his dose, and taken orally.

Now, we don't intend to villify our cardiologist. We just had to help define the lenses through which he looks. So, when he came to us today after studying Eli's echo more closely, we recognized for him to define his numbers as "encouraging" to be an extremely positive thing. So... what now? He wants to do another cath lab in less than 2 weeks.

Wait. What?! Like... 2 weeks?! Not February, but October? As our heads spun and we were caught by the headlights. We were made aware of just how unprepared we are for this.

There are a couple additional factors to this decision. Primarily, we'd also like to stay in front of any chest cold or flu. Since either of these could ultimately create a very short end to Eli's life, our cardiologist feels Eli's echo numbers look good enough to test now, and dodge handling the viruses floating around this winter in his current state. We get the impression it's a little "seat of your pants" and the window of opportunity may be narrow, so it all helps define testing now as a risk worth taking.

Should Eli's lungs again show to be insufficient, we understand our cardiologist's next step to be compassionate care. We take Eli home, and make him comfortable for as long as we have him. We trust that clearly defines the importance of passing this test... in two weeks.

We are obviously heavily distressed. We have one last chance at a live-or-die test in two weeks. We feel so inadequate when we realize it takes something this severe to bring us to our knees in prayer, but that's the reality. It's easy enough to continue to pray, but we become comfortable and complacent with our circumstances and forget to plead to God, with everything we have, for Eli's health and continued life.

That's where we are now. Can you please receive the full severity of Eli's condition, and every time you remember, join us in begging God for Eli to be able to grow into a little boy, an adolescent, a young man and into full maturity as his life continues to glorify God for many years?

Matthew 7:7,8. 7"Ask and it will be given to you; seek and you will find; knock and the door will be opened to you. 8For everyone who asks receives; he who seeks finds; and to him who knocks, the door will be opened.

John 14:13. 13"And I will do whatever you ask in my name, so that the Son may bring glory to the Father."

Matthew 21:22.
22"If you believe, you will receive whatever you ask for in prayer."

Jeremiah 29:11-13. 11 For I know the plans I have for you,” says the Lord. “They are plans for good and not for disaster, to give you a future and a hope. 12 In those days when you pray, I will listen. 13 If you look for me wholeheartedly, you will find me.

Since before Eli was born, we've prayed for a miracle the doctors couldn't explain. This remains our prayer.