Happy Things!

 I said I was going to post a list of happy things, so here it is!

 

 

• Job is happy happy all the time.
• For example, he just got two molars on the right side of his gum. He was noticeably sad about it, but it's laughable to compare his response even when sore from teething to that of one of my other kids. Job just has a joy and contentment that faithfully carries him through pain with a sweet disposition.
• He weighs almost 19 pounds, steadily gaining weight! Woo hoo! Many CHD kids struggle greatly with eating and weight gain but Job has exceeded expectations in this (one) department.
• He loves to eat! lots of purees (root vegetables are still his favorite), but at least part of whatever we're eating at every meal. It is so fun to watch him explore new tastes and textures. His face is so expressive and the moment a new food reaches his tastebuds we know if it's a winner or not.
• His most recent audiology assessment went really, really well! He cooperated beautifully and they were able to get more data than they were expecting. His hearing loss (found in April) is resolved back to normal hearing! He still has a good deal of fluid in his ears but it's less viscous. The audiologist we saw told me that she thinks this fluid is because of his oxygen: the constant air forced into his nose makes him more congested and his fluids don't drain as well. We'll keep a close eye on this, but it was thrilling to get this good report!
• His (incredibly thorough, incredibly long) lower extremities ultrasound looked great! His leg clots are fully organized and the necessary collateral veins are getting blood where they need to. Collateral veins are one of the things I continue to be amazed by, perhaps because the illustration of side street roads vs freeways is so evocative for me. His right leg currently measures at the same exact size as his left leg, so we weren't necessarily worried going in to the ultrasound, but it was "fun" to see the collaterals doing their job nonetheless.
• It also appears that they will have left groin access for the cath, according to said ultrasound. Of course, we'll see tomorrow, but the plan is to use the groin rather than liver for access. (To check on his P AVMs particularly, groin access is necessary as the catheter can't get to the right area using the neck. But since Job's right groin access is clotted, we needed to know why his left access was so difficult last time. A clot? Going through the liver is an option but would mean putting a permanent hole in his liver that would bleed a lot and need a permanent plastic plug put in after the cath... So yay for probably not needing to use the liver! This time at least.)
• His speech has absolutely exploded. It's amazing. And so surprising. I filled out several assessments and we did a big speech evaluation in April and May. I kept saying "no" to question after question. He qualified for "intense intervention" therapy. We got on the wait list and then got a regular weekly spot... And then, three days before his first regular appointment, he started talking! He babbles all the time now and has "ba," "pa" "ma" and "ra" sounds. He'll also make a "ha" sound as he waves, which I'm 98% convinced is a "hi"! He likes making noise and is so excited when we mimic him. He sounds so raspy but he's getting loud! We're probably going to every other week or maybe even only monthly speech therapy appointments! The biggest concern will be supporting his core strength and oxygenation so that hr has the stamina to sustain long vocalizations (and eventually long sentences). It amazes me how important oxygen is. I never would have thought about Job's oxygen needs affecting something like the length of a sentence!! But we'll deal with that as we go.
• Job can sign for "more" but it hasn't quite become magical (ie, him using it all the time because he realizes doing so gets him something) but once he starts to use it more often, we can work on additional signs!
• Hematology gave the sign off to switch to once a year check ups (well, if this cath goes well = without clots)!?! I can hardly believe such a thing is possible! We were doing weekly lab draws and phone calls and monthly appointments for so long! So far all of the testing has come back negative, so he's just been really "unlucky" with line provoked clots. The head hematologist is working on creating a vascular map for me so I can have all of his clot information on one piece of paper for future ER visits, etc. It's been confusing to keep track!
• Job's upper body strength is increasing daily. He still had a long way to go, but he pushes off things and raises his arms above his head all the time now! We continue to work on tummy time and his quadraped throughout the day, but the progress is amazing!
• He is quickly becoming so proficient at scooting around on his bottom. He's getting fast!! He's so proud of himself that I can't even be annoyed or worried. I'm giving that burden to his PT! She's shown me a number of exercises to do with him to counter some of the bad habbits/preferences that come with bottom scooting, so we're doing those. We work especially hard on learning to crawl (or at least mimicking crawling) because of the cross lateral development that needs to happen. We're all learning to adjust to a mobile baby! But the big boys have been really good (better than me!) at making sure his surroundings are safe and appropriate.

Ok! That's all I can think of right now. How amazing is that long list!?!

Cath Schedule

It's official!

11:30pm (Wednesday) last oral feed.
6:15am (Thursday) check in to the OR.
7:30 start time for anesthesia, etc....
3 hours scheduled in the cath lab.
4 hours recovery, laying completely still and flat.
Afternoon probable discharge.

 I'd just gotten off the phone with the pre-op clinic nurse this morning, writing down this schedule, when a photo notification popped up from the program I use to store my photos.

June 27, 2015. It was my first very solo trip taking all three boys on a fun (non-medical) excursion. Sometimes when I get these little "one year ago today" notifications, the nostalgia is absolutely overwhelming and brings me back to the sharp emotions of that day. High highs and low lows.



That day felt like such a hard fought victory. Job had only been out of the hospital for 23 days and everything was so very tenuous. So very fragile. But we had SO much fun.

Things are more stable now, but unfortunately not as stable as we had all hoped for 2017. Job continues to chart his own course, disregarding any and all expectations and timelines.

I know it's not true, but it doesn't feel as if much has changed from a year ago. We have yet to reach that post-Glenn stability we were told to expect. I know that life with a CHD kid won't really ever be stable, but I keep hoping for something more steady.

I'm so very nervous about the cath this Thursday. The procedure AND the results. I long for hopeful news but I'm desperate for any sort of definite answer, though I know "definite" is impossible. I'm struggling to be patient: I want know what his oxygen requirements will be from here on out.

Yet I'm determined to push away all of my fearful thoughts about the things that could go wrong during the procedure or all of the devastating things they could find. Some moments this is easier to do than others. So then I do things like listen to this song: https://youtu.be/EbbGjx4ZKL8

The big boys are in VBS all week, and while I'm grateful they have this opportunity for their own sakes, I'm very thankful for the timing for my own sake as well. It's been good to focus on Job exclusively as well as work out my emotions on some neglected housework without their company. Especially because this is perhaps Seth's busiest week of work in the life of his business. I see it as a special mercy that they have something so fun to do every morning during a week when we're preoccupied and busy. A perfect picture of faithful goodness.

End of June Update

I've written multiple updates in the last two weeks and then haven't published them. I've struggled mightily to know what to say about Job.

The last weeks weeks have seen an explosion of progress in speech and PT. I need to write up a post on all of the advances he's made. It's exciting to see progress! Job has also been enjoying the outside with his brothers as the weather has cooperated.



I'm fighting hard against my anxiety about Job's fourth cath (next Thursday). I despise caths. It's irrational that I fear them more than, say, open heart surgery. I guess it's hard to send him off under anesthesia whatever the reason. Perhaps the reason caths bother me so much is because they are a big deal (and have had some hard consequences for Job, clot wise!) but aren't necessarily thought of as a big deal.

I do want answers about WHY he still needs oxygen. But what if that answer means he will stay on oxygen indefinitely (as seems to be a very likely possibility)?

So I'm also fighting against a great deal of bitter disappointment. I wanted him off oxygen in the OR back in September! Certainly nothing about Job's life has gone according to my plan, but I got so excited when we started weaning off oxygen following his March surgery! Sometimes it seems as if it would hurt less if I didn't hope for things like weaning off oxygen support.

I'm sure my emotional turmoil has only exacerbated my weariness, but it's been exhausting month running around to so many appointments. I believe I counted 20 in the month of June? We'll see what the cath results are and what that means for Job's care, but we be able to drop down to a mere 8-10 appointments/month for July and August.

But I also just get tired of suffering through this burden sometimes, beyond the daily hard work of it. An emotional or spiritual exhaustion, perhaps.

Perhaps I can use last night as an example. Though I had placed an order earlier in the week, I hadn't heard from home care services about the delivery of Job's new set of cannulas. I called earlier in the morning, but didn't hear back. Job had the cannula he was wearing, so though I didn't have a back up, I wasn't particularly concerned.

Until he broke it at 7pm on a Friday night. So I made all of the phone calls and did all the things to set up an emergency delivery. Not a small amount of work, but I was just so sad and frustrated that I had to do any of it at all. I was feeling sorry for myself and just sick of doing any of this medical stuff.

In that frame of mind, I was sitting in the front yard waiting for the delivery and listening to a John Piper sermon on 2 Corinthians: "16 So we do not lose heart. Though our outer self is wasting away, our inner self is being renewed day by day. 17 For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison, 18 as we look not to the things that are seen but to the things that are unseen. For the things that are seen are transient, but the things that are unseen are eternal."

It's a sweet reminder to me that renewal has to happen daily, because I get depleted daily. I think I forget that sometimes and get frustrated that I can't do it all on my own strength. Which, of course I can't! I also needed the reminder that our suffering isn't meaningless. Sometimes it feels meaningless. And just cruel, actually.

I think of "good" as meaning something I like and I want rather than meaning good FOR me, for my soul. And for Job's soul. HLHS is a light and momentary affliction compared to the weight and eternality of Glory. I don't say that flippantly. I also don't say it confidently. But I say it because it's true and I need to renew my perspective by speaking truth to myself.

The line "for my good and Your glory" has been a comfort to me this year, a purpose statement, if you will. But I had forgotten it this week. I'm sure I'll forget it again too, because it's hard to lift my eyes up off of myself most of the time.

Mid June Update

I haven't written very much because I don't really think I have much to say that's worth saying. But my desire for information and complete record keeping is nagging at me to write something, for posterity's sake. 

This "journal" of sorts that I've been writing out this last year and a half (!) has been an immensely helpful tool for me to process this journey of emotions and information overload. It has also been a wonderful way for me to double check dates and procedures and medications as I interact with Job's various providers. So. Update. A mid June update. Let's do this.

Job is on .5 lpm of oxygen. He sats around 80% but has struggled to go down to .25 lpm since his cold a month ago. He has been on home oxygen since mid October and shows no signs of weaning off any time soon. We're hopeful it's just a matter of time, but are starting to prepare for a long term oxygen use. His cannula is very much getting in the way as he starts to move around and gain strength.

To help us figure out why Job is still on oxygen, he will undergo his fourth cardiac catheterization on June 29th. For some reason, these caths are almost harder for me emotionally than his surgeries even though they're not necessarily as invasive.

He on seven medications, given at ~8 am and pm: omeprazole, erythromycin and miralax (digestion), lasix and spironolacton (diuretics), enalapril (heart function) and aspirin (only once a day). He takes his meds like an absolute champ, never protesting.

Job has a special ed teacher come to work with him twice a month and we go to the Children's Therapy unit twice a month for speech therapy and every week for physical therapy, with occasional occupational therapy consults. We're figuring out our new schedule for cardiology follow ups but currently expect they will be every two months for the rest of the year. We see gastroenterology every six weeks. We just had a good hematology visit and (provided Job doesn't clot during this next cath) plan to switch to yearly follow ups! We now see nephrology and neurology yearly as well. May and June have been particularly busy months for his appointment schedule as we just checked off all of those yearly visits (plus had a hospitalization and extra cardiology visit). Monday (June 19th) we will have a follow up audiology appointment to study the fluid found in Job's ears back in April and decide about ear tubes. We will also do a lower extremities ultrasound to confirm that his leg clots are in fact stable. I get to take or make daily phone calls to his various providers, also. Particularly to his pharmacy and home care services, ordering med refills (every 10 days) and new oxygen tanks and lots of cannulas (he's ripping them off and sometimes in half every other day or so!).

I have to be so careful about keeping his appointment calendar! It is certainly overwhelming at times to look at my calendar and see his appointments (all marked in green ink) on almost every day of the month, but then I make myself reframe it and declare my gratitude for the HUNDREDS of people who work to keep Job surviving (and hopefully thriving)! I counted 18 appointments for the month of June (I told you it was busy!) and have to also declare my public gratitude for the dozens of people (my parents and our church especially) who have helped out by watching Ezra and Isaac so I can chauffeur Job around.

His weight gain has been good, closing in on 19 lbs! He loves to eat and has been exploring new foods almost daily. He's getting his molars in, which hasn't been pleasant, but I'm excited for him to be able to eat even more textures and foods! We have a follow up VFSS (swallow study) sometime soon to determine if he is still aspirating on thin liquids.

After being completely aphonic, following his vocal cord paralysis in his first open heart surgery, Job gradually began to make some noise, then some louder noise, and then, suddenly, these last two weeks he's shown us an explosive burst of vocalizations! It has been absolutely amazing! We went from almost no sounds to new sounds every day!

Also, Job is quite mobile now. He discovered that he can scoot around on his bottom quite handily and is so proud of his newfound skill. I want to be proud of him too but am a little disappointed that doing so has apparently taken the place of going from sitting to his hands and knees. Job's physical therapist was especially helpful yesterday at his appointment, giving me a new set of exercises to work with him on (on a medicine ball) to work on his core stability. She reassured me that she'll worry about his (oh so important) crawling and I can just be happy for him that he can move independently. But Job also never stops moving. He wiggles and wiggles, no longer content to sit and cuddle or play. He wants to explore everything!

So! There's ever much more than you wanted to read about the various aspects of Job's medical care.

Early June Update

Job is independently moving from sitting to his quadraped (all four hands and knees) and then back to sitting several times a day now! It's not always the smoothest transition, nor is it easy for him, but it is so exciting!!



Monday was his cardiology appointment. There isn't any new bad news. Nothing changed. We're still watching his oxygen requirements. His heart function looks good. His tricupsid valve regurgitation looks unchanged.

Do you hear the "but" coming? Job should not be on oxygen still, even with the lung injury from his cold.

Because the fistula (done on March 7th) is so rare, we were already planning to do a cardiac catheterization at the end of the month to get specific numbers on pressure and flow through the fistula and officially show that his pulmonary AVMs were gone. For research, for data purposes, for a medical journal.

Not because he would still be so oxygen dependent.

Now the reason for doing the cath has shifted.

Hopefully Job just needs more time. But it's probable we will be on oxygen for a lot longer than anyone was expecting.

Remember, Job was supposed to be off oxygen in the OR after the Glenn (back on September 16th). They kept us hospitalized for a month because he had a rough recovery and because he was oxygen dependent. Then they let us go home on oxygen for what was supposed to be no longer than three weeks. Then we did a cath in early December and discovered his AVMs. Then we had to wait for him to get bigger for the fistula.

Going in to this appointment, I was so excited about all of Job's recent progress (PT, eating, weight gain). Since we had a good echo at Mary Bridge, I was feeling pretty confident about his heart. I thought he had made enough progress off of oxygen and that the trend would just continue. I was just over all feeling all sorts of excited and hopeful.

But the appointment instead served to remind me, explicitly, how very sick Job is, how very complicated his first year had been, and how very long we might be on oxygen.

There are lots of things I know to be true. Yes, God has been and will be faithful to Job. Yes, over the next 30 years there will be countless more medical advances. Yes, we have to wait for cath results. And so on. I *know* these things. But I don't *feel* trusting right now. I'm concerned, but probably disappointed most of all.