Friday, May 29, 2009

Slow going

Just a quick update on Eli's progress. He is SLOWLY recovering. He is still intubated and slightly sedated at this point. They did attempt to extubate him last Saturday, and he failed. They might attempt it again this weekend. He is being fed through his G-tube. He was started on a small feed and SLOWLY increasing it to his full feed amount. This is to be sure he tolerates and digests his food properly. He hasn't had anything in his tummy for a few months now, so it needs to be stretched out.

Please continue to pray for:

  • healthy strong lungs for Eli.
  • endurance for Jason, Tanya, and Paige.

Thursday, May 21, 2009

Paige's Water Park

We pulled out Paige's pool yesterday and created a water park with her swing set. At first, she was scared to go down the slide, but eventually did. There was no stopping her after that! In fact, first thing this morning she asked to put on her swimsuit to play in her pool. Free admission for any friends that want to join her at her new water park.

Tuesday, May 19, 2009

Fundoplication Results

Surgery went fine. The only complications were half expected, and totally prepared for. The intent was to go in laparoscopically, so they inflate the abdomen with CO2. This pushes on the diaphragm, and puts some pretty decent pressure on Eli's lungs, and they didn't take that very well. Think of the lungs like a sponge... they were squeezed pretty hard, and couldn't do their job. So they had to deflate the abdomen and perform the surgery classically, with an incision. Otherwise, everything was as expected. One fundoplication, one G-tube.

The squeezing of the lungs caused a little trauma, so they're using the respirator to restretch those lungs back out. Eli will probably be intubated for a couple days so this can happen. As we left late last night, his numbers and bloodwork showed the lungs to be performing their job better than immediately after surgery, so he appears to be on the right track. This is good, as they'd obviously like him sedated for as short a period as possible.

Eli's next step is still a few weeks out, when they take him to the cath lab to measure blood pressures inside his lungs. This is how they'll be able to tell if he'll be ready for the Glenn procedure, where they route the superior vena cava (upper body return flow) directly into his lungs instead of to his heart. Here's just a quick recap:

Your typical cardio system has a flow pattern of: Heart>lungs>heart>body, repeat. The heart pumps blue blood to the lungs, it comes back to the heart red, then gets pumped out to the body red, and comes back blue. Repeat. Eli only has one pumping chamber, not two, so his blood flow will be altered to: Heart>body>lungs, repeat. Red blood will go from the heart into the whole body. On the blood's return path, it will make a passive journey through the lungs, turn red, and come back into his heart. Repeat. His blood's flow through the lungs will only be passive, not pumped like yours and mine, so the lungs have to be in good shape in order to still flow blood even though the blood pressure is now much lower.

And there's your anatomy lesson for the day! Thank you for continued prayer, continued support, and a continued outpouring of love on us. Today, we're headed to the zoo with Paige, then lunch with Nana, and the afternoon with our sedated little boy.

Sunday, May 17, 2009

Public Prayer Follow Up

Tanya and I just wanted to take a quick minute to thank so many of you for all the support you're giving us. The last count was over 100 people at the prayer walk this evening, in addition to all the notes of encouragement we got from people who weren't able to make it. For everyone to take a couple hours out of their day, drive 80 miles round trip, and pray in record heat (105 degrees today!) is more than we can really wrap our heads around. To so many of you who couldn't make it due to geography, illness, or other conflict, you mean the world to us, also.

Thank you, Pastor Jim, for assembling some sort of complete project out of the broken pieces of a puzzle I threw at you. Thank you everyone else for participating in an act of blind faith. Thank you, CHCC security team for making sure we weren't terrorists... multiple times! Ha!

Tomorrow morning, we're back at the hospital real early for Eli's rescheduled fundoplication and G-tube. With a little luck, they'll throw in a circumcision while he's knocked out. We're excited because his surgeon is Dr. Allshouse, the head of all pediatrics. His anesthesiologist is Dr. Seiden, the head of all medical staff. Both of those names carry a lot of respect with the nurses, and everyone tells us we're in the best hands possible.

Unlike during his first surgery, Internet access is now filtered at the hospital, and it makes posting to this blog very tedious, and using Facebook almost impossible. But we'll do our best to keep everyone updated.

To those of you who took pictures this evening, we'd love to have a copy of those. If you're able to forward any, my public email address is .

Talk to you all soon. We need to get some sleep tonight.

Thursday, May 14, 2009

Public Prayer for Eli this Sunday at CHCC

You've all been so great with your love and support, we can't even begin to put our appreciation into words. For everyone who's been tagging along, anyone who'd like to support us further, anyone at all who would like to pray with us for Eli, we feel led to dedicate some time to corporate prayer at the hospital itself.

Sunday @ 6:30pm
Prayer walk at Children's Hospital
Anyone who would like to come, is invited. There are a lot of you here. If you're reading this, this invitation includes you.

As Eli's health seems to continually decline, Tanya and I have been begging God for an understanding of why this is happening. We've attempted to dedicate this entire process to the glorification of our Creator, but it's easy to be bold with your faith around your friends. It has become crystal clear that Tanya and I need to mature to be less private and internal with our faith.

I have been reminded of Joshua 6, when, in faith, the Isrealites marched around Jericho. Similarly, we feel led to put together this time of prayer and public confession of our faith. We pray that you might find the time and desire to be there with us.

If you have any questions, we're glad to help. Let us know.

- Jason and Tanya

Tuesday, May 12, 2009

Storing up for winter

Eli’s health took a little nose dive this morning. Nobody’s exactly sure why that happened, but as I write this, he’s back to normal. For some reason, he had a short stint of poor oxygenation. As we visit with him this afternoon, he smiles at us, and is as active as ever.

We had a bit of a tough conversation with Eli’s cardiologist this afternoon. It’s sort of hard to explain without going into extreme details, but I’ll do the best I can. Eli’s next cardiac surgery is supposed to be the Glenn, in which they route his upper body return blood flow directly into his lungs instead of his heart. There are beginning to be slight concerns that this won’t be possible, due to the development of his lungs. The veins in the lungs have to be extremely free and non-scarred or calloused for the Glenn to be an option. Given the fights he’s had in his short life, both Eli’s cardiologist and cardiac surgeon are concerned this might not be the case with Eli. They will be testing for this before his surgery to verify.

Should his lungs show significant damage or incapability, the door to the Glenn becomes closed, and we would be forced into looking at other options. We aren’t heading down that path yet, so we don’t know what all those options are, but we do know that it will make our struggles to date seem rather trivial.

Please understand clearly: This isn’t the case. It’s a possibility. We were just made aware of the possibility that this could get ugly.

In addition, I’ve recently been hit with several stories of complete failure before growth. From completely different areas of my life have come stories of lives shattered and people giving up before greener and greater pastures. I have a lot of fear for the implications of these stories.

Please pray that Eli’s lungs are sufficient.
Please pray for an outpouring of miracle healing like we’ve never before seen.
Please pray for Tanya and I to be more disciplined in prayer.

I feel the need to remind myself what was written in November, 3 months before Eli was even born:

There are many things that create a foundation. One of the foundational pieces of our life is our understanding of how God works. God is in control of all. Everything that happens, therefore, is orchestrated by God. God does things for his own glory. Therefore, anything that happens, anything that is, was intended to bring glory to God. Regardless of how terrible, unfair or just plain pointless something may look as you're facing it, its grand scheme value is in the glorification of God.

This is why we continue to live.

Monday, May 11, 2009

False alarm: No surgery today

Just to keep everyone updated, there was no surgery today. Eli went down to holding, and we met with the anesthesiologist first. There had been confusion on the timeline for when Eli was deemed far enough beyond his cold to be ready for general anesthesia. All we've heard this whole time was "4 weeks." The question was whether 4 weeks started at diagnosis, being clear of the virus, or being clear of all symptoms of the cold. The anesthesiologist confirmed today that it was 4 weeks from being totally clear of all symptoms. That was only in the last couple of weeks.

The surgery is on hold until Eli is fully ready. We expect 1-2 weeks from now.

We continue to thank you for supporting us and praying with and for us.

Friday, May 8, 2009

Fundo Monday

Eli is scheduled to go into surgery for his G-tube and fundoplication on Monday morning at 9:30. We don't have many details, except that they are going to attempt the surgery laproscopically. If Eli proves not able to handle the pressure from the CO2 they use to inflate the body, they will continue the surgery conventionally.

Please pray with us that:

  • Eli stays healthy through the weekend and is strong enough to endure the surgery
  • The doctors can assess Eli correctly in his readiness for the surgery
  • The surgery can be done laproscopically
  • Eli recovers and heals quickly
  • God's glory is fulfilled
A note about visitors:
While we would love your company during Eli's surgery, the hospital restrictions are going to keep you from coming into the hospital. Swine flu restrictions are still in place and only 2 primary care givers are allowed in the hospital, even for surgeries. We will do our best to keep everyone updated.

Sunday, May 3, 2009

Family Photos

There's not a lot to report. We just wanted to share some photos of Easter, when Paige was allowed to see Eli. And today, he smiled.