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.

A New Pediatrician

We went through a few pediatricians with Paige until we found one we liked. When Eli was born, we looked into getting him in-line, as well. Come to find out, Dr. Fraley is retiring. Bummer!

So the search was on again. There was another doctor at the same office who came with good recommendation from the cardiology team at CHCC. He was the kind of doctor who enjoyed a challenging child (perfect), and even had specialty training in cardiac conditions! It seemed like a perfect match. We met him Monday, but we just didn't click. We realized it was very possible he was caught a little off-guard by Eli and his mountains of paperwork and medical history. It sounded like he was expecting a standard "well visit, meet the patient" kind of visit. We decided we'd give him another chance. However, we started to hear repeated recommendations for another doctor, Don Fields of Yosemite Pediatrics. He was so well praised, we decided to give him a chance. This has turned out to be a great decision!

First impressions of Dr. Fields office were of a very welcoming, new building. Fresh, modern colors, rich woods and a very open, airy environment. Of course, ergonomics don't decide a doctor, but it was refreshing. The staff was genuine, nice, and helpful. As soon as they saw Eli, they brought us back into the "Baby Room," telling us they were expecting sick kids any minute, and that it would be a good idea to isolate Eli.

We transferred into a normal room. and Dr. Fields came in almost immediately, laptop in hand for his paperless office. He sat with us for quite some time, asking lots of questions about Eli's medical history, and creating many new questions we'd never before heard. He made observations no one else has made, as well. The most notable of these was in regards to Eli's temperature. For some time now, Eli's had low-grade fevers. He's been poked and prodded so many times to figure out what's wrong, but nothing ever comes back positive. Dr. Fields made some detailed explanations (I'll spare you) about how he thought it could be a problem with the temperature regulating portion of his brain! He told us "Anytime anyone sees abnormal temperatures, they immediately jump to the conclusion of a fever or infection. Why hasn't anyone does a CT scan of his brain, to see if he has any other physiological defects?" So he'll be scheduling that for us himself.

We mentioned who his doctors were at CHCC, so he said he'd head over there this evening and sit down with all of them and catch up! We asked if all of Eli's transport needs qualify us for a handicap placard, so he's sending all the paperwork into the DMV for us. We asked about a PG&E break for his medical needs, so he's sending in all the paperwork for us. He gives all his patients his personal cell and pager numbers. He has on-site X-ray.

Are we impressed? An emphatic "Yes!" to say the least. It seems too good to be true, so the cynic and skeptic in me are waiting for the other shoe to drop. Until then, we're more comfortable and excited than we've ever been about a pediatrician!

His Web site could use some attention, but here he is:
http://www.yosemitepediatrics.com

Returning Update: Not returning

Whew, that was close! The surgeon who originally did Eli's fundoplication and G-tube went out of his way this afternoon, and visited us in the emergency room. He scanned through Eli's records, checked him out, and genuinely "took time out" for us.

Eli's problems appear to be irritation on the inside of his G-tube, where the "mushroom" balloon that keeps the tube place is rubbing the inner wall of his stomach. This isn't completely unexpected, but not very common, either. After X-rays, blood work, and dye traces, they've sent him back home. We'll be increasing the medicine that controls stomach acid, and adding a numbing agent to the area before each feed until that area settles down.

Dr. Allshouse is an amazing man. We're lucky to have someone of his caliber available to us.

Thank you all for all your immediate support.

Matthew 18:20- For where two or three come together in my name, there am I with them.

Returning

Just a quick note, and request for support.

We've brought Eli back to CHCC because he's having problems feeding. Our own assessment is that stuff is going in, but not coming back out. It hurts him so bad to eat, we hasn't eaten since his 3am feeding. We hope it's not C-diff complications. Nothing's been verified yet, but we expect he will be re-admitted today.

The last 24 hours have been extremely difficult for Tanya and I. Neither of us has slept, Eli hasn't stopped screaming. He still mixes in some great big smiles, but they get cut short with abdominal pains. This is the toughest time we've had yet, with Eli and our own care. We're both running on adrenaline, alone. And we miss Paige, dearly.

Please pray for Eli's health.
Please pray for our sanity.
Please pray for Paige's stability.

Homecoming

In one of the most momentous chapter changes of his life, Eli has made it home!

Only 2 weeks after we were told he wouldn't be headed home before his second surgery, this very event actually happened. Ironically, Paige's visit to the ER was while we were dealing with Eli's discharge, only a couple hallways down the way! We didn't expect him home before October, following recovery of his second surgery. Only 6 days ago, he was in the PICU. He's made it into the step-down unit on several occasions, only to get sick every time, and escalated back into the PICU. We've begged the doctors not to send him into the step-down unit, which is a floor filled with sick kids, but lacks the isolation and control of the PICU, but this just wasn't possible. Discharge directly out of the PICU just isn't something they do.

So we changed our tactics, and took an extremely aggressive, active role in his care. Praise to Tanya for being there many, many hours this last week to care for Eli, so the nurses didn't have/get to. Praise to her for managing anyone who walked through his door, and their santitation practices. Praise to her for convincing the doctors we could do everything they're doing, at home! So they sent us home with all his meds (down to 9 of them, 6 by the end of the month), some oxygen bottles, and a monitor.

He's been home since Friday evening, and everything's gone really well. Doctors orders are extremely limited/controlled visitation. He's still very fragile, and any sickness will send him back to the hospital. This morning, we took a big risk, trusting God would bless our intentions and keep him healthy. Today, there were baby dedications at church. Our church represents a couple hundred people who have been supporting us so dearly, and blessing us. We trusted God would honor our desire to bless them with a chance to finally meet the boy they've been praying for, and have seen only through photos shared here. The fact that today is also Father's Day only made it that much more poignant for me.

As we begin this new chapter, we need to clearly reiterate that we're going to have to limit visitation to a very small, select few. We hope this doesn't create animosity or offend anyone, but we need to limit him to as little exposure to potential hazards as possible.

Please pray that he continues to stay healthy, grows stronger, and continues to be used by God to bring glory to his name.

Let's All Go to the Hospital!

We've often commented on how difficult it is to manage two children, when they can't be in the same place at the same time. Today, we found this inconvenience to be a fair trade off to having them both in the hospital. We'll take "healthy" any day. Paige got to visit the emergency room this morning!

She was sitting on her booster chair, at the kitchen table. She decided to push off of the table with her feet, and the chair fell backward. She bumps and cries, but it looks like she'll be alright. She's a bona-fide toddler with scraped and bruised knees to prove it. Then she starts vomiting, and she NEVER does this. In fact, this is the first time in her entire life. I immediately had concerns for head trauma. Her pupils dilated appropriately and she was still talking. She was just a little quiet and clingy. She ended up vomiting three times before the ER visit was over.

The docs assessed her, and weren't extremely worried. She walked without any problems, and all the other symptoms were absent, as well. They gave her a medicine to help control vomiting and a popsicle. By halfway through the popsicle, she was talking so much we had to quiet her down. She told all the nurses about how we were going to see Eli, and all about his condition.

That was this morning. We just put her to bed, and she's acting completely normal. The last time she sat at the dinner table, she made a comment about how she's not going to kick the table any more.