Bumps in the road

Thank you everyone for your perpetual prayers for Zion! Today he is doing okay. But boy is this journey all over the place. By the time I get around to writing these blog updates his status can change multiple times! We are definitely developing a thick skin for getting bad news.

A few days ago Zion was started on Nitric Oxide to see if it would help what we believed were pulmonary hypertensive crises he was having (where his oxygen requirement goes up to 100% and he still isn’t fully saturated despite that). It seemed to help immediately which was such a relief. But then Zion started seeming ill again by the next day. We were unsure if it was the nitric (causing now overcirculation in Zion’s system), or if he was just getting sick.

A few mornings ago I got one of those calls from the APNs – those calls to alert you when things aren’t looking good. So I went to the hospital on Wednesday and stayed into the evening. Zion was getting lots of things done to him. More IVs. More septic work ups. And they also gave him blood to help him oxygenate better (since he was maxed out on the vent). Within 15 minutes of getting the blood he spiked a fever. My boy was burning up and he was so incredibly uncomfortable. It was scary because we were unsure if it was possibly the blood they gave him (that might have been tainted)? But as the days progressed it seemed that this sickness just might have been brewing in the background and surfaced coincidentally right as they gave him blood. At one point, his fever climbed as high as 105. It was a rough few days for Zion. He was so uncomfortable and all the team seemed to be able to do to calm him was give him sedatives.

George and I were on our knees praying for Zion. It’s always touching to hear your husband pray through tears. We believe God is answering the prayers of all of us because Zion’s little life continues to be sustained to live another day.

Fast forward to today. Zion’s fever has been under control the past couple days thanks to the cooling blanket they have him laying on. However this has made it hard for him to sleep due to his legs shivering. They also hadn’t fed him for the past few days. I believe all of that was the cause of him being quite agitated and restless, so he has gotten a few doses of sedatives the last 24 hours.

Thankfully, the team is starting to give him milk again today. Just a small amount (10mL) to coat his stomach and see how he does. I was disheartened to hear that the team would need to place yet another picc line today. They need a more stable line to administer his antibiotic, and his IVs keep going bad. Zion has had so many sticks lately. I watched them make multiple attempts to place an IV line Wed evening (Zion is a “hard stick” because his little veins are very difficult to find) – so they resorted to his head again. I just started weeping. He’s been through so much, yet he continues to fight. He’s SO brave during this painful procedures. I wish you all could witness it. God’s grace is definitely upon him. I think it hurts me more than it does him.

His blood cultures came back as having Staph epidermidis. So Zion basically had sepsis. This is a common nosocomial (hospital-acquired) infection in babies with foreign devices in their body (like trachs and G tubes). However we think at this point it’s on its way out because his blood culture today was negative for the bacteria. Hallelujah and thank You Jesus!

As you might have seen in my last post, Omaha has been officially approved! Every thing is set for him to go now. But God has a way of throwing curve balls… it definitely took the wind out of our sail when Zion unexpectedly got sick. It’s like we take 2 steps forward, and 3 steps back. But in this, we are remembering that it’s not about us. It’s not even about Zion. It’s about God, and what He is doing in Zion’s story to glorify Himself. George and I were talking recently about how the Lord tests His children at times to see how deep our faith in Him truly is.

The delay has caused some questions to arise for me. Not full fledged doubts, but questions. There’s a chance that after Zion gets to Omaha, once Dr. Hammel does his own full assessment of Zion in person, that he too might decide that surgery isn’t in Zion’s best interest. (I wish he could tell us that before we make the trip, but it’s not possible. He must assess Zion in person). Would insurance even pay to send Zion to Omaha, and then back to Ohio if no surgery is done? Or what if he gets the surgery and then doesn’t make it because his little heart can’t handle it? What if Zion is in Omaha many months? How will our family manage that? I believe these are normal questions that any parent would consider. I’m not fearful, but am a little uncertain of so many things as this gets dragged out. But as I’m learning, God often will only show you the next step, or two. He most certainly doesn’t show us the beginning to the end. He requires His children to walk in faith.

So that is what we are doing. We are going to press forward with Omaha. Zion is developing pulmonary hypertension (which is common in T-18 babies). This is complicating matters because it is treated completely opposite of how you would treat Zion’s heart failure. So the cardiology team here is trying to balance all of that and find the sweet spot right in the middle for Zion. I will be eager to hear how Dr. Hammel thinks Zion will do post surgery with all of these things going on.

So we thank everyone for praying and inquiring about Zion’s status. Since family time is my priority, it’s been very difficult updating social media in a timely manner as you can imagine. It’s my hope that in Omaha I will have more time to update more frequently. Thanks for your patience with us. Once Zion is fully healed of his infection, we expect that him and I will be on a plane very soon! So we can’t say for sure what day that will be, but for now I’m praying for a quick recovery allowing for departure this Monday.

The other day our 4 year old told us of a dream she had. She saw Zion walking around his hospital room. Yes, WALKING! We are hoping in faith this comes true one day soon.

Blessed be the God and Father of our Lord Jesus Christ, the Father of mercies and God of all comfort, who comforts us in all our affliction, so that we may be able to comfort those who are in any affliction, with the comfort with which we ourselves are comforted by God. For as the sufferings of Christ abound in us, so our consolation also abounds through Christ.”

2 Corinthians 1:3-5
Look at this chunky monkey!
I love this position more recently because it allows me to SMOTHER his head with kisses while he listens to my heartbeat
Zion’s ever-changing looks: his hair/eyebrows are beginning to grow browner, while his eyes are remaining blue.
One of my husband’s colleagues blessed us with, Chik Fil A of course! Thank you Karen!
Zion on Sunday – the day he started getting sick
The look Zion gives when the “big lights” go on and he knows trach care is coming
Zion’s known for giving the “side eye” to green-gloved people who approach him
The inhaled Nitric Oxide machine being used to help Zion’s pulmonary hypertension
Thanks to the Cardiology team for making this diagram of Zion’s heart for us
He’s safe under his cape 🙂
Wednesday night was Zion’s roughest for sure with this bout of illness
Being sick for your 4 month birthday is no fun
I had the pleasure of meeting another fearless Trisomy mama in person the other day. I’m so blessed that Rhonda and I are at the same hospital. I have one more mama here to meet hopefully soon!

Here is Rhonda’s amazing daughter celebrating 8 years!!!
Daddy laying on hands and praying for Zion
The nurses who take the time to learn about our son are quite special indeed
Zion is becoming very familiar with the VAT team (vascular access team). Here they are using ultrasound to try to find an arm vein. I was praying fervently before this one. The tech found it perfectly thanks be to GOD!

The other week Zion’s trach had a big enough air leak to finally hear HIS VOICE! It was the most beautiful thing I’ve ever heard!

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