October Update (Meds)

In the span of a week Job got to visit with three of his great grandparents! Here he is with my dad's Dad, Pappy.

Job started pulling up to stand in mid September and these days he's standing more often than not!

He got off two of his digestive meds, omeprazole (for stomach acidity) and erythromycin (for gut motility), at the end of September and so far, so good! We are so thrilled! So now he's only on miralax as far as his digestive system goes. He's quite dependent on it and if I'm even a few hours late with a dose he has trouble for a few days.

So now Job is only on enalapril (heart function), lasix and spironolactone (both diuretics) and baby aspirin (for clotting) and sildenafil (his vasodialator). We had to do all sorts of things (stents, surgeries, meds) to get to a place where sildenafil would help Job get off oxygen, but I can't believe how helpful it is!! You can tell when the 8 hours between doses are almost up because he starts turning a bit blue again.

We're waiting to find out if Job will qualify for synagis shots again. They're so expensive ($1,200/shot/month) that they don't just get doled out easily, but we'd really like him to have that extra RSV protection. Studies have shown that for medically fragile kids ages 1-2 yo they're not always effective (or at least not as much as they are for kids up until 1 yo), but Cardiology is pushing hard for insurance to cover it again for Job this year.

That's my meds update! More later!

Plane Trip!

I've been chastised for not posting as often, but I find myself struggling to articulate anything right now. So, I write half a post and then quit because I don't know how to communicate my jumbled thoughts and emotions.

Last October Job was struggling for his life. This October we flew on a plane to Florida to meet Seth's grandpa and hang out on the beach and see some alligators.

Words cannot express the utter amazement and wonder I feel at writing those two sentences!

I promise to write more about what Job's been up to lately, but here are some fun pictures in the meantime:

Job Cruises

Job continues to thrive!

Two days ago (the two month anniversary of the last time he used oxygen), he started cruising at PT! https://youtu.be/EeoHtdRVCzU

He kept "walking" back and forth, along the bench, and I could hardly even see through my tears. His gross motor skill progress has just exploded these past two months! He couldn't be more proud of himself - except that he thinks he's at least 4 (if not 6) years old and should be able to do everything his big brothers do (and he has the bruises to prove it)!

Today is the one year anniversary of his hospital discharge after the Glenn (open heart surgery #2). I've been thinking about this a lot, because last September/October was so scary and so dark. Why? Why was that surgery recovery so much harder for me emotionally than his Norwood (open heart surgery #1) recovery? The Norwood was the more complicated surgery.

I think it's because I was so much more prepared to lose Job back in April 2016. Or even any time that summer. But I had such high expectations for the Glenn. It was supposed to change our lives because, afterwards, Job would be so immediately better. He would be satting so high and he be so healthy! "Just make it to the Glenn" was a constant refrain. I looked at it as this big destination. All around us, other HLHS patients thrived after the Glenn.

And then he had a horrible recovery. Nothing about the subsequent months went as it was supposed to. I kept waiting. And waiting.

I searched and searched for other hypoplast kids dependent on oxygen post Glenn. For other kids with AVMs. It was lonely. His doctors were surprised and frustrated too. It was scary.

I am so excited and oh so thankful that Job is doing so well now. But there has been a large part of me that can't quite believe it yet.

It felt like such a big accomplishment when Job got off oxygen. Such a tangible, long-awaited, milestone. But emotionally I kept holding my breath.

I don't know if I can do that anymore, though. There's something about Job taking steps that broke through my defenses. I'm now just so absolutely excited and hopeful. I think our other kids were so excited about walking that I've held walking up on this pedestal for Job. And he had been progressing so slowly that walking seemed so far off. But now he's doing it!

I wish I could adequately capture his jubilant pride on camera. He is so excited to do everything and he wants to make sure everyone watching him is excited too.

I know he's still ridiculously sick and his poor body is irreparably broken. But suddenly that's not my overarching thought any more. We're not operating on such a thin margin of error. He's gaining strength and has more of a reserve. The focus is expanding.

I'm scared. If I just expect something bad to happen, then it will hurt less when it does. But if I'm hopeful, then it will hurt more when something bad happens.

But Job is doing so very well that it's easier to get caught up in his joy and excitement about life. I can compartmentalize a bit more now. This is going to be a struggle for me for the rest of Job's life, but I'm thankful for this bit of progress. I'm recovering just a bit from the trauma of this last year.

I like verses and songs about hearts now, more than I ever have before. There's a double meaning that's so profound to me as I read verses like these, in Psalm 147:

"He heals the brokenhearted
and binds up their wounds.
He determines the number of the stars;
he gives to all of them their names.
Great is our Lord, and abundant in power;
his understanding is beyond measure."

My prayer has been for Job's literal, physical broken heart to be healed. But it's also for his, for my, for our, figurative, spiritual broken heart(s) to be healed. And even in the middle of the most scary and most painful moments, we have seen that to be true.

This last year one of my new favorite bands has been All Sons and Daughters, and this song has particularly resonated with me because of the line about broken hearts: https://youtu.be/uHz0w-HG4iU

"You give life, You are love
You bring light to the darkness
You give hope, You restore
Every heart that is broken
Great are You, Lord

It's Your breath in our lungs
So we pour out our praise
We pour out our praise
It's Your breath in our lungs
So we pour out our praise to You only"

While I have tried to pour out my praise, despite my *feelings* (which certainly have often been despondent), there is now a new "lightness" to my heart and I can sing along to this song with fewer tears in my eyes. This is a respite that we're very much enjoying right now and we're so grateful that God has seen fit to allow it, I think especially because we know that it is temporary.

September Update

Two weeks ago I set these two photos side by side to show the stark contrast between September 2016 and September 2017. And then I broke down sobbing and never posted.

We are now past the one year anniversary of Job's second major open heart surgery, the Glenn (9/16/16). But the month that followed was, in some ways, the scariest month of Job's life. I tried to go back and reread my posts and look at some of the photos but it was too painful to remember his many life-threatening complications.

Instead sitting next to his bed, weeping and pleading for Job's life, I'm now searching the house for him because in the 30 seconds I took my eyes off of him, he scooted off to make a new mess for me to clean up.

We are so grateful.

Oxygen Update

Job is THRIVING off of oxygen!!

He hasn't had a whiff of oxygen in 19 days! It's been 24 days since he desatted. And 33 days since he was on continuous 24/7 oxygen! I mean, who's counting?

I love not carrying around oxygen tanks (they're heavy!) and I really love not policing him pulling off his cannula. It's just wonderful.

But Job is ECSTATIC to be off his cannula. That's what I love most. These last three weeks, his entire demeanor has just been shining with excitement and wonder. No constraint! He scoots around with such freedom!

He's starting to pull himself up to stand. He's climbing up and down little steps. Basically, he never stops moving. Ever. Or eating. And he's so proud of himself! His pride and wonder and excitement is contagious. (Take, for example, this video of him sliding today: https://youtu.be/JutHyrcCh5k So proud and happy! But I couldn't seem to capture that excitement in this photo of him eating a popsicle tonight.)

We saw cardiology last week and I've been marveling at their pronouncement ever since: Job doesn't go in for another appointment for THREE months. We haven't ever gone so long between appointments! (They were even twice weekly, outpatient, at one point!) Dr. Files said this is the FIRST time in Job's life that he will "mindfully neglect" Job's cardiac care. No list of things to research for the next appointment. No new meds or procedures to try. No immediate concerns.

THIS IS SO AMAZING!!!!

Glimmers of Peace

Try as I might to abandon myself in this joy, I have wept a lot this last week. With the realization that this is the healthiest Job has ever been comes the realization that this is probably the healthiest he ever will be. Sometimes when we get exciting news it's actually just painful because it's not actually good news; just good news in context.

I have to work so hard at keeping my expectations in check because I've pretty much always been disappointed by Job's complications. This has been a hard thing for almost exactly two years, but there has been something especially poignant about the past month.

I don't know if I can explain it because I'm not sure what it is or even how long it will last. I feel a lightness, a joy, an exuberance, that I haven't felt since before we found out we were pregnant with Job. It's a struggle still, but it's one that I'm winning: (right now) I'm just genuinely so happy that Job is so happy.

Tonight I reread my posts from early August. I was so weary. So discouraged. So much has changed so quickly. I'm hopeful again. This month has been a respite. A beautiful mountaintop experience I will get to look back on while we're in the next valley, I hope. I'm finding it easier to catch Job's contagious joy.

I don't necessarily think it's just that Job is off oxygen. It's bigger than that. Something finally clicked into place a bit more the night after we got home from cardiology last week. Seth put the boys to bed while I did some lesson planning and when I came back in the room and saw them all sleeping so peacefully I just completely lost it and cried as I haven't cried in months.

Job is still really, really, really sick. But Seth has always had an easier time than me enjoying each moment of Job's life, instead of thinking ahead to the next bad thing, and as he held me and talked to me that night, I just calmed down. He said the same things he's said before. I just listened? Really, I'm afraid to even type this out because it all sounds silly to me. It might be a fleeting moment. But I want to acknowledge it.

Audiology Update

On Friday Job had his third audiology appointment since April and was completely cleared of hearing loss concern! Yay!

Being off oxygen (12 days and counting) ought to help him retain less fluid in his ears (which caused the initial, though temporary, hearing loss) because his nose and ears will drain fluid more efficiently without air being forced into his nose.

I'm so grateful to now be able to firmly check this concern off our list as a non-issue!