Tuesday, July 14, 2009

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.

18 comments:

Carrie Miller said...

Tanya and Jason,
I am so sorry about this news. I have no words. I will pray. Please let us know if there is anything we can do to help you with any needs you have.
Carrie

Anonymous said...

Jason, Tanya, and Paige,
We are praying for your family. I don't know what else to say. I am so sorry. I'm praying for hope and a good plan of action.
The Horiuchi Family

Amy said...

I wish I could do something for you. I want to hug you, make you pancakes, just something to make it all better. I'm so sorry. I'm so sorry for the ache in your hearts. I'm so sorry for the disappointment.

I love you all so much! I will pray for miracles! I will pray for God to be glorified! God is already being glorified as you two continue to rely on Him!

And even if Eli lives another 3 months or 30 years, his story will live on. It will be a testimony of two parents who loved greatly and hurt deeply, but never stopped trusting the Lord. Even when His ways where not their ways. Praying for peaceful rest and comfort from our Heavenly Father.

Love you all,
amy

Max and Jenny said...

My wife and I have been following your blog since before Eli was born. Know that we are praying earnestly for all of you.

-Max and Jenny Parish

The Favelos said...

My heart is hurting and I am praying with and for you. You guys HAVE changed and matured already, and it beautiful to see your deep and growing faith in the Lord. I will be praying that the medicine works, and like you said, that the doctors will be completely amazed by a miracle, and that God will get all of the glory - because it could only have happened through Him. We love you and please know that we are here for you guys!! xoxo, Heather

Kristine said...

Oh how sad I am to hear your heart wrenching disappointing news, Eli has brought so much Joy to so many people. You and Jason are amazing, and sweet Paige is the best big sister Eli could have. I wish it could all be better. I will continue praying that God could make this all better, for a miracle. I am so sorry for your sadness.

Kimberly said...
This comment has been removed by the author.
Kimberly said...

Dearest Tanya, Jason, and Little Paige,

I'm so sorry. We will continue to pray for you and little Eli. It was such a blessing to see his little smiley face the other day and we are thankful for the blessings that you have with him each day.

Tad and Kimberly

Robynn's Ravings said...

I was alerted to your situation today by mutual friends of ours, Max and Jenny Parish. Max asked me if I would post about your situation to spread the word.

I have a blog with about 170 followers and would like to help if I may. I would love to post a "please pray for" button with html code that others could pick up and post to their blogs. I would also write a post about the situation and link them back to you.

What I would need would be a tight photo shot of Eli for the button. You could send me a photo file at robynnsravings@gmail.com. If this isn't something you would be interested in I completely understand but I would love to know many, many people are lifting you and your precious son up in prayer.

May blessings and healing be yours. We will be praying for Eli's complete and miraculous recovery.

Robynn's Ravings said...

My dear friend, Debbie, at Jade Hollow, has already created the button and we are ready to roll out with it tomorrow, along with a post. I couldn't locate an email here so am hoping you see this just as soon. Debbie has done a wonderful job and if you want to send me your email I can forward you what she has. Blessings.

Tony said...

Couldn't sleep - praying for you.

Christina said...

I am speechless and know that no words can be as comforting as you'd like right now, but we continue to pray for your sweet family and precious Eli. We trust that God is in control and is completing His perfect work through all of this. Blessings and prayers.

The Long Family said...

I have been following Eli's carepages for awhile and I understand the long journey your family has been through. My son also has HLHS and is now a glenn. He is 15 months old and doing will now..but had a rough start. Our norwood was rough and thought we would loose him to sepsis many times. We finally got him home at 3 months old. We were about to put off his glenn untill 7 months old. But he also had a rought time with this because his pulmonary pressures have always been very high. He has been on the same drug..also known has viagra 3 times. The first 2 times his body didn't tolerate it..but this time it has done wonders. His saturations were in the 60's and he was very purple before and we couldn't figure out why. His heart has always functioned well. The finally did a cath and his pulmonary pressures were very high. He had a few collaterals for the second time but they were to small to coil off. As soon as they started the viagra he immediatly started breathing easier and slowly over a few days his numbers came up. He now sits in the high 80's and is pinker than I have ever seen him. It drove me crazy because I could never understand why he was bluer than he was as a norwood....its supposed to be the other way around. I know lots of kids on this drug and it has done wonders for them. I will definitley keep little Eli in my prayers. Please let me know if you ever have any questions =) email me anytime at clangel07@gmail.com.
God bless you all
Courtney

P said...

I will continue to pray!!

Rebecca Parker said...

Your words remind me of Job 13:15,
"Though He slay me, yet will I trust Him."
My heart is deeply saddened by this news. I will continue to pray.
Love,
Rebecca

Tamara B said...

dear friends, i'm at a loss for words as i read this so many days after you posted. my heart aches for you, my stomach literally hurts for your pain. praying for strength... for all of you!

Susan Baltierra said...

Tanya & Jason, how awesome is our God!! He chose the two of you to love Eli and Paige. They are a gift from God and He knows exactly what He is doing. Every day is a miracle and we need to thank Him for each breath of life. I know God has and is equipping you with emotional and physical strength to go through each day. I am praying for you and I know God hears our prayers. Love you, Susan

Debbie Shockley said...

Although I`ve never met your precious Angel, I`ve prayed daily for his miracle and still believe that know matter what the outcome, his life has brought so much joy and a real unity of prayers across the USA. Only time can reveal the true impact his life has give all of us. If nothing else it has shown how depended we are as a child of Jesus to be His hands, His heart and reach out in love to those in need. I feel honored to be apart of the prayers`s for baby Eli, my earth Angel! Debbie Shockley