He's severely aspirating all fluids (especially his own saliva) and is actually just on a spoon-fed puree diet right now to try to keep his lungs a bit safer. This is only sustainable short term, so we're urgently working to figure out a better solution (thus this emergency surgery). As part of that we're trying to avoid all germs as he's extremely high risk for pneumonia and such complications.
If this surgery doesn't make a huge difference in the next few days he'll be getting a NG tube and then we're likely looking putting in an implanted device in his throat in early January to force his left vocal cord into better position to protect his airway.
If this surgery doesn't make a huge difference in the next few days he'll be getting a NG tube and then we're likely looking putting in an implanted device in his throat in early January to force his left vocal cord into better position to protect his airway.
He's cheerful and active, though he's tired of coughing and throwing up and appointments. And we think he's as cute as can be.
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| Job holding cousin Mila a week or two ago |
Nights have been really intense as he often chokes throughout the night, spirals into a coughing fit and then throws up repeatedly. Seth and have been taking turns sitting next to him while he sleeps to prop him up through the night when he wiggles down to a more horizontal position and then making sure his airway is clear while he's throwing up and cleaning up after him. I've called Otolaryngology repeatedly and taken him to so many appointments and tests this month. Dozens of providers and multiple specialties have been conferencing about what to do next. In some ways it feels like the old days (and that's not a good thing).
Cardiac-wise he's healthier than he's ever been! But this issue has been steadily escalating since mid-October when his (most recent) gel injections expired. (Well, actually he's had so many issues since he was 5 days old when the nerve to his left vocal cord was severed in his first open heart surgery... but it's been especially escalating this fall.)
Cardiac-wise he's healthier than he's ever been! But this issue has been steadily escalating since mid-October when his (most recent) gel injections expired. (Well, actually he's had so many issues since he was 5 days old when the nerve to his left vocal cord was severed in his first open heart surgery... but it's been especially escalating this fall.)
Even before he started aspirating so dramatically this past month, Job's lungs were terribly compromised from his heart defect before transplant, so we've needed to be especially careful with germ exposure this fall. Forget COVID - a simple cold can send him to the ICU (and has, so many times)! Now with very wet lungs he's especially susceptible to respiratory infections, so we've had to get even more strict about what we're doing/where we're going until he's in a safer place. While we know God already knows the number of days here on earth that he has allotted to Job, we are trying to prayerfully steward the blessing and responsibility of his care.
We've felt lonelier probably than ever before in this season and especially covet your prayers for us as we trust God that He is using these accumulating trials for His glory and our good. We decided to give Job his name when we received his pre-natal diagnosis because we wanted to be able to say, and we want him to someday say, “Naked I came from my mother’s womb, and naked shall I return. The LORD gave, and the LORD has taken away; blessed be the name of the LORD” (Job 1:21). We know that God has faithfully cared for Job every day of Job's life. We readily acknowledge the great blessings bestowed upon us. Job is alive! What a miracle it is to be able to say that. We are so grateful! But we're also weary and frustrated and concerned. We know grief and gratitude can coexist, but it's messy.
We've felt lonelier probably than ever before in this season and especially covet your prayers for us as we trust God that He is using these accumulating trials for His glory and our good. We decided to give Job his name when we received his pre-natal diagnosis because we wanted to be able to say, and we want him to someday say, “Naked I came from my mother’s womb, and naked shall I return. The LORD gave, and the LORD has taken away; blessed be the name of the LORD” (Job 1:21). We know that God has faithfully cared for Job every day of Job's life. We readily acknowledge the great blessings bestowed upon us. Job is alive! What a miracle it is to be able to say that. We are so grateful! But we're also weary and frustrated and concerned. We know grief and gratitude can coexist, but it's messy.
There have been so many phone calls and appointments and procedures this fall and so many COVID tests and blood draws. Job only really started talking in February, and we had such a boring summer medically speaking, so it's been a lot for him to process verbally with us these past months. He's very adamant that he does not like pokes and he wants to "throw needles in the garbage" and each hospitalization has been really difficult for him to endure. We've also had many other hardships pop up this fall, some big and some small, and it's humbling to be reminded how very much we're dependent on God's mercy for every aspect of our sustenance. For example, I randomly strained my back this week and spent the entirety of today on the couch with a heat pack and our van broke down again. Why? Why isn't another hospitalization this week enough?!?
To be perfectly transparent, I often feel like God should stop giving me trials because I've already had enough trial and I already trust Him enough. But just this week, doing our advent readings and hearing the prophets testify about God's faithfulness to His people, I was convicted anew that I am no different from the grumbling Israelites that I'm so quick to criticize for their complaining unfaithfulness. So I pray and start preaching to myself again and I turn on my playlists of various songs that help me worship God through yet another sovereignly ordained opportunity to trust Him.
The big boys and now Job have so many questions about God's goodness and sovereignty in the trials of this hard year so we keep talking and praying and singing. It takes so much prayer and so much (supernatural) strength to persist to fill my ears and mind and heart with these truths. To preach them to myself and my kids. It's certainly not easy or fun or natural to do so. So please keep praying for us. Pray for Job's physical health, yes. Absolutely. I want more years with him. I also want respite. But more than that we want our sons to have eternal life, not just physical life (John 11:4).
It sounds so spiritual to wrap up this post with these declarations of trust. But I'm saying these things out of weariness and pain and faithfulness and the Holy Spirit working in my heart. And I'm begging for prayers of stamina to continue to trust God. Right now it's hard to exuberantly boast of God's faithfulness to us, but, "for the sake of Christ" I want to be content in this place of weakness and trial and calamity. I want to trust God when He proclaims "My grace is sufficient for you, for my power is made perfect in weakness." (2 Cor. 12:9)
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| Today's fancy pre-op clothes |
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