Heart Cath!

Guess who got to hold Frightful?

Frightful's inability to get off of respiratory support for the last 3.5 weeks, even after his plication, has been a great cause for concern to his medical team. There have been small improvements, but they have never been substantial enough or lengthy enough. If anything, the improvements made after plication have only served to emphasize how dire his respiratory condition was.

This has made it increasingly obvious this week that the likely source of his respiratory needs is, in fact, a profusion problem. Today's echocardiogram (heart ultrasound) confirmed this suspicion. It seems as if Frightful's right lung is "taking" an excess share of the profusion to both lungs, which adds to the list of reasons the left lung has been struggling especially. However, the right lung isn't even getting enough profusion.

We had been so thrilled with Frightful's cardiac function up until today's echo, because it always looked so good in his echos. He had a lot else going on too, but we really thought the plication would be the answer to his respiratory problems. We (and his medical team, initially,) thought his heart repair had gone so well and was working so well. So to hear this news is really discouraging.

So tomorrow morning (at 10:30) Frightful will be going in for a "heart cath" to further explore his cardiac function problems. He will be sedated and a thin tube (catheter) will be inserted into an artery in his groin and threaded through his blood vessels up to his heart. They will probably release a dye and take a lot of photos and measurements to measure blood flow and pressure and get a better idea of what's wrong.

The doctor who will be performing this procedure told us today that we're hoping this is a "plumbing" issue because those can be fixed, and not a "motor" issue. They might even be able to fix some of the "plumbing" issues tomorrow, during the cath, such as ballooning a narrowed artery, etc, should those prove to be the problem.

The reality of how serious a condition HLHS is has hit home tonight, perhaps in a new way. I, at least, was overconfident in his repair. I thought (4 weeks and 2 days post-op!) that his heart would be fine! We were past the worst! But his poor half-a-heart will always struggle to keep up with its too-heavy workload and we probably need to expect many more future complications.

It is good to hear this news insofar as we have a reason for his very slow progress up until this point. It will be good to have even more answers (we hope) tomorrow. But it is hard. Our poor baby has been through so much and it is so hard to send him off to yet another procedure, even though we know it's necessary.

Wednesday Update (5/11/16)

For the last few days, Job had been on a "6" on the CPAP, but just today he was switched to the hi-flo nasal cannula. It's a different sort of respiratory support; not necessarily more or less supportive, just different. They seem to be wanting to find that right thing that is going to work for him and help him progress toward eventually breathing without any support. We're praying that his respiratory system gets stronger, little by little, day by day.

He is at his goal feeds (16 mL/hr), and they are even fortifying the breast milk so that he gets more calories. We're praying that he gets fatter.

Job is on a few medications, most notably milrenone (helps the squeeze of his heart). That is the only one he's getting via a drip thru his PICC line. The others (baby aspirin, lasix, and a couple others) are just a couple oral doses per day. They have attempted to wean him off milrenone a couple times, but his cardio and respiratory have performed better while on it. We're praying that he can function without it.

Autumn has been sick lately and consequently hasn't even seen Job since Friday, but she is getting closer to full health. We're praying that she can hold him again soon.

We are so thankful for the medical team at Seattle Children's. No matter what happens to Job, we'll always praise God for the amazing work they do. They work around the clock for him.

This quote from Spurgeon is often on my mind, and I think it applies to so much in life: "The Christian should work as if all depended on him, and pray as if it all depended on God."

We humbly declare that the God of Heaven and Earth is Sovereign over all, and our very lives - in health and sickness, in success and failure - are in His hands. Yet we make effort, and we rely on the efforts of those around us. We never say "Que sera, sera". On the contrary, we know that God uses our work.

-Seth

Daddy Snuggles

I just got this selfie texted to me! Today Job gets three breaks from the CPAP, for an hour each - and he's handling them well!

I think the highlight of Job's day, however, is going to be staring into this handsome face:

Plication Post-Op!

Job's plication went "exceptionally" well. He is even already extubated (off the ventilator)!! Because they gave him a localized nerve block, his sedation and pain meds were hardly increased, although he did have to restart milrinone (his heart med). He will probably be able to get his chest drainage tube out tomorrow.

I was incredibly discouraged and just really sad when we got the news he needed this surgery, because it felt like such a big set back (and it is). But walking into his room after the surgery it was immediately evident, even to my untrained eye, that his color was improved (he's pink again!), his breathing was less labored, and his renal NIRS (measuring the profusion of blood to his kidneys) were the highest I have ever seen them. I guess it just gave me immediate reassurance that this was a very necessary procedure and that it's already proving effective.

This surgery definitely requires several days of healing before we will definitively know how helpful it is in terms of weaning him off the CPAP, but all signs are hopeful!

Since Job will be sedated for the rest of the day we're leaving the hospital to go celebrate Ezra's fifth birthday.

Diaphragm Plication is Now Necessary

Well, we just got the call. Job failed his attempt to go down to a "7" on the CPAP.

They wanted to do surgery (a diaphram plication) tonight but his surgeon got called in to do an emergency surgery on someone else. We meet the surgeon at 8am tomorrow instead to sign consent forms.

It's a "quick," "low risk" surgery but there is certainly still "regular" surgery risk compounded by his half a heart.

Wednesday Morning Update (5/4/16)

Yay, yay, yay! Job is off of a major heart medicine (milrinone) that was helping his heart squeeze enough to pump blood through his body, so that means his heart is strong enough to work by itself! This also means that he doesn't get any meds by IV anymore (just through his feeding tube).

He just has went up by 2 calories on the protein fortification in his feeds to meet his target goal and therefore has now met all of his non-respiratory goals!!

Today his team is trying to bring him down on the CPAP to a "7". (They haven't tried since Friday because of his infection and withdrawal and generally too much going on). Now that he is a little stronger and has a bit less going on we are hoping he can handle this attempt to wean off CPAP.


Job really likes being held, particularly at an upright angle, with his hands free of his blanket. When he gets agitated it usually works to let him grip my fingers until he calms him. And he loves his pacifier! He usually gets most agitated when he can't find his pacifier (especially when it's already in his mouth).

Today while I was holding him he pooped up the back of his diaper and leaked through his blanket onto me. I can't exactly say I *enjoyed* the experience or smell but it was one of those "normal baby" experiences that I am really grateful to have with him.

Monday Evening Update (5/2/16)

I got to hold Frightful for most of the evening today (after spending the weekend celebrating the marriage of my brother and new sister!) and comfort him through several fits of agitation. He desperately wants to be held as constantly as possible and wants to suck on his pacifier almost as much.

His infection is under the firm control of antibiotics and he's been able to tolerate an increased caloric intake (protein fortified breast milk) and is almost to his goal feed amount (4 more calories/mL to go)! He had to go back on a maintenance dose of the med he was having withdrawals from, but then, as of tonight, was able to ween off it again. He just needed a bit more time to get off it? All three of those things can be considered progress, but for the last three days they completely halted any attempts to ween him down on his CPAP because he was struggling so much.

His medical team has set a "firmer" deadline of mid week to see progress (off of his CPAP - a process that might begin again tomorrow... he's on an "8" and needs to get down to a "6" or even "5") before they start exploring why his progress has been so slow to this point (besides that whole major surgery/half a heart thing).

So, I'd sum up his weekend and goals for this week as "strength for today and bright hope for tomorrow".

Would you please pray for his weak respiratory system?