Wednesday, February 25, 2009

One week update

OK, so we go two days without an update, and you all let us know! Thank you for being so diligent in following the blog, and supporting us.

Eli is one week old today, five days since open heart surgery. He continues to make progress, and we're so thankful. It's very easy to start seeing this stage as a quick setback, and forget to recognize how fragile he still is. This is still the ICU, his nurse is still dedicated to only him, and he's still being pumped with (looking across the room) 14 different medications. He's still heavily sedated, and he's still on a respirator.

Monday night/yesterday morning represented the peak of his swelling. Fluids are being retained all over his body. This is completely normal and expected. As his surgeon stated "When you smash your thumb with a hammer, the entire thumb swells. We just hit his entire body with a really large hammer, and he's swelling." At the peak of the swelling, he couldn't even open his eyes. It was most obvious around his neck and the back of his head. Late yesterday, they finally started the diuretics to help speed the process, now that his body is starting to eliminate these fluids on its own. We've seen his eyes several times today.

He's off the epinephrine, which is adrenaline, used to increase blood pressure. He's managing that himself. His respirator is now feeding 23% oxygen, only 2% higher than normal air. His blood's O2 saturation is showing 85% as I type this, exactly where they want it to be.

They've taken him off of fentanyl, a sedative, because he's building a tolerance, and have changed it out for an alternative.

He had an ultrasound/echo of his heart today. The cardiologist says "his echoes look good!" There are so signs of obstruction in either the LVOT nor the VSD. Praise God for those! We so desperately hope Eli will be able to maintain a 3 chamber heart, and these two areas are the deciding factors. Please continue to pray for these, specifically.

The rest of the equation is Paige and Tanya and I. Paige is handling this whole thing very well! She's managed to learn how to sleep with us in the room. She's not had any full-on meltdowns. We're recognizing how helpful it will be to have on-site babysitters once the out-of-state grandparents go back home. She gets play time from 10am-lunch, and someone to watch her sleep from about 1:30-4:00. So many have asked how they could possibly help, and this has become our first obvious need.

Tanya and I try to make time for each other, as best we can. We're in a Catch-22. We so desperately enjoy and even need our friends. Every visit is such a treasure for us, honestly. We're also recognizing that we're not making time for just Tanya and I because of this. For now, we're still waiting for all the dust to settle. Half of the grandparent support will be gone by this weekend, so that will throw a new twist into the equation. We're hoping to be able to finalize our system after that time. Hopefully, that doesn't read as them being a hindrance. There's no way we could do this without them. But, in a week, we have to learn how to do this ourselves. Maybe anchoring ourselves into specific "down time" with Paige will help stabilize our day, as well. We're oncomprimisingly dedicated to each other, and set on making each other a priority. Without a solid foundation, I can see how destructive this is known to be on some relationships.

One other final note. The helipad is real close to RMH, so we hear every landing and lift off. Now being on this side of the trauma, and seeing the families shattered as they watch the Life Flight, we're torn every time we hear that sound. It's a horrible scene, yet we're so thankful for the technology that makes that level of transport possible. We hear stories of accidents and crisis from other RMH residents, and we can only imagine how much worse that must be, as compared to us being able to prepare for 4 months for what's to come. Our hearts go out to those families.

What to pray for:

Eli's continued recovery, obviously.
Specifically, that the LVOT and VSD stay the course, and are a permanent solution for him.
That Paige continues to feel loved, special, and continues to handle this whole thing so well.
That Tanya and I bond even closer through trials, rather than build walls of defense.
That God continues to be glorified by the entire process. That's what this is all about.

10 comments:

The Favelos said...

Thanks for the update --- I have been checking! This brings tears to my eyes. I am glad Eli is doing so well, and I will continue to pray for all of the specifics. I can imagine his little swollen face. (I remember Abigail was really swollen too.) I would love to see a picture! I am glad that you guys are taking time for yourselves and being aware of the importance of that, and making Paige feel special through all of this. God IS being glorified through all of this, and I know that will continue to be. God is so good. It is beautiful to see your trust in Him. Love you guys lots.

Heather and Doug

SCrabTiger said...

We are so thankful for the updates. I can't wait to read the progress that God is making in this little body of Eli. He is so lucky to have such a supportive family with him every step of the way. I can see God in every step as I read your words. You are an encouragement to each other as well as to those around you. God is in you 100%.

Love Ya, Timm and Sharon

Bonnie said...

Happy One Week Birthday, Little Man Eli! May this the just the first of many times we celebrate the life God has given you! Can't wait to see you in our arms.

Heidi Short said...

Thanks for letting us know specifically how we can pray! Keeping your whole family in my thoughts and prayers.

David and Stephanie said...

Great to hear your thoughtful and detailed updates. It really helps to focus prayer on your families situation. PTL for the successes in Eli's health and your commitments to each other.
Our prayers continue.

Rebecca Parker said...

Thank you for the specific prayer requests. Still praying.
Love,
Rebecca

shannonhoriuchi said...

Hi guys! Jack and I will be able to help out with Paige on some days. Tues/Thurs are best. Let us know when we can help! Thanks for posting updates! I check them everyday and it's hard to not hear how you all are doing. And thanks for telling us the specific requests you have. Makes it very easy to pray for you. Love you guys!

Anonymous said...

I continue to be in awe of your strength and support of each other, Jason and Tanya. God truly did choose the best family to take care of Eli. My heart and prayers continue to be with you.

(Auntie) Sarah

Kim said...

I just found out about your precious Eli. I will be praying obviously; I will also pass on the prayer requests. You are showing such wisdom and wit, heart and soul, strength and brokenness. I have similar photos of my two youngest. (I'm not saying that I know what you are feeling, only that I sympathize.) I see in both your eyes the same look and feelings that Rob and I have on our faces in the photos we have of Zeke and Megan. You would think I would have some great words of comfort or wisdom to give, but I don't. I can only say that I KNOW God is everything He has ever claimed to be. I am praying that over you both... Paige and Eli too.

Eli is handsome! Precious. The photos are great. I can almost smell him. I want to give him kisses all over his little face! If only I were there.... I would hug you both and cry with you, pray with you and hopefully provide a laugh or two. But I know what you really need is God's presence, so I'll pray for that.

If you need anything call, write, fb, email. I'll stay posted on the blog.

Love to all of you.

Kim Wageneck

Tamara B said...

Okay, I know I'm simple minded, and oftentimes distracted, but I've been curious every time I see your picture how you got/get Paige into ICU if kids aren't allowed because of RSV. I thought you mentioned at one time that you had a plan but I don't remember hearing anymore.

I'm so glad that you guys know the need to focus on each other. We too know that and still find it hard to accomplish.

Tanya, I know you have a million other things to worry about but I wanted to share that we're starting the adoption process... and heavily considering Ghana as the country of choice.