Prayer Warriors!

Job got to meet one of his most faithful prayer warriors today.

I suppose introducing Job to Titus was especially sweet, not just because of Titus' enthusiasm, but because it was yet another reminder of how faithfully our family has been prayed for these past months. There are so many people (some that we don't even know!) who remember us in prayer daily and we are so very grateful!

Emesis

This little guy sure loves his food tastings and his Daddy! He has such a joyful attitude, even when he doesn't feel well, like this evening.

Wasn't I just writing about the fragility of life? The mountains and valleys of life with a CHD? Job's health feels so tenuous. It seems as if for every forward step he takes, there is at least one or two backward steps. His sats have been holding steady at 80-81. He even hit 82 this morning and there was talk of trying to go down to a half liter of oxygen.



But... He has vomited eight times in the last 44 hours. And we're trying not to get too worried. Yet.

As always, he has a whole team of doctors watching him closely. We're all on high alert but there's no apparent reason for these "emesis episodes" (as I have to chart them in the tablet, which makes me laugh).

My mind immediately jumps to scary things like heart failure because poor gut profusion is one of the red flags for heart issues (the gut can do without blood flow in crisis better than, say, the brain). I KNOW that's an overreaction at present but it doesn't FEEL like one.

I always struggle with conclusions for these updates. Job's health has never rested in our hands and that hasn't changed these last couple of days.

NICU Follow Up (6 months)

Job had a his big 6 month developmental assessment yesterday (10/24).

As we were waiting for one of the several providers to come in to see us, I snapped this photo of him playing with his feet. We've been working on developing this skill for the last week and a half with several exercises from Job's wonderful physical therapist, but this was the first time I'd ever seen Job do it on his own!!



Job is quite behind on his physical developmental milestones and gross motor skills, scoring around 3 months of age (though he's 6 months old). Perhaps especially because of this, the team of therapists yesterday was quite surprised and pleased with his social and emotional responsiveness scores, which were much more on target for his age.

Job's sats aren't really improving and we're starting to get nervous about what this could mean. It's probably not helpful to even think about right now because he is still allowed more time to get them up, but it's hard to fight the temptation to anxiously worry about his sats and all of the potenial reasons he's satting this low compared to where we want him to be (and where he needs to be to get off oxygen).

If it weren't for his inadequate sats we'd probably feel a much greater sense of relief to be post-Glenn and able to switch our focus more fully to therapy. Right now it feels like we're in an awkward waiting phase.

Honestly, in some respects I don't know if we ever will be out of a waiting stage. Isn't that what life on earth is? But with his diagnosis, Job's life will always be particularly fragile and we will likely have many complications and scares. Sometimes I forget that, especially as he is improving and, it seems, entering a more stable stage of life. I suppose we will eventually find a balance!

One Week at Home!!

Job has been home from the hospital for one whole week!

The week has flown by as it's been a busy week of appointments for Job! I kept telling myself that, once we got through Thursday, things would slow down. But Monday it starts up again! Physical therapy, pediatrician well child, blood draw, early childhood intervention therapy and cardiology appointments... It takes lots and lots of people checking on Job to keep him healthy!

We were doing a very slow narcotic wean but, perhaps since he was also teething, we realized it wasn't slow enough. Taking a few days off from the wean was so nice! But we started back up yesterday and have about a week left.



Job's sats just aren't high enough. Still. Even on 1lpm of oxygen. He had a long cardiology appointment today, here in Tacoma, and everything that they can see by echo looks good. The thought continues to be that his low sats are pulmonary embolism or pulmonary lung bed related and will, hopefully, resolve with more time.

We have an appointment in Seattle on November 1st and, if his sats aren't improved by then, talks about a cardiac cath will begin.

Therapy and our subsequent practice sessions exhaust Job, but we'll keep working on his endurance! It's so exciting to watch him learn new skills. It's very hopeful to see progress day by day and week by week. I'm learning so much about how to help his little body learn to move!

He's doing a great job tracking our voices or toys and reaching out (even across his body!) for objects and he has great head and neck control. He loves sitting up on our laps, watching the world around him. As of this week he has been sitting in a bumbo (pictured) and his high chair, but working his core like that is particularly exhausting! He can roll to his side but until his sternal precautions are lifted next week we can't work on tummy time or putting any weight on his chest and arms. I'm excited for him to eventually learn to roll over! That might be his next milestone.

We reduced the fortification of Job's milk in the hospital, but even with fewer calories per bottle Job is gaining about 9 grams a day. Yay! We want to see that number a bit higher (15 grams!) as weight gain will help strengthen his body and lungs in particular (which ought to help his sats).

We're trying to relearn living together as a family and trying to catch up on the last five weeks of mostly-incomplete school work. It's a big adjustment! I think we're also trying to recover from the emotional exhaustion of what proved to be a rather traumatic hospital stay. And we're trying to avoid any and all cold and flu germs!!

We are all so happy to be together again. There has been an awful lot of baby snuggling this week.

Thankful

Thankful for Tylenol, to break through difficult opiate weans.

Thankful for big brothers, who share their snakes.

Thankful for happy smiles, the persistence of joy through pain.

HOME

It is so good to have Frightful home. So so good.

Leaving the hospital was a catalyst, I suppose, to think about everything that happened while we were there. Including how very close we were to losing Job. I guess now that he's stable and home I've been thinking (and dreaming) about how critical he was. We are so grateful Job is alive! But it's going to take a while to recover from this hospitalization.

Job has moments of joy and contentment, particularly when he's sitting up and watching his brothers play or entertain him. But it's been a pretty difficult last couple of days. He's miserable withdrawing from his dilaudid and clonidine. We think he's teething too. He has 10 more days of this wean as scheduled, but I may ask to prolong it, depending on how today and tomorrow go.



It's also strange to get used to his oxygen tanks and concentrator. We had to go to the pediatrician and grocery store yesterday and it was hard to remember we were connected to the tank! Ezra and Isaac did a good job of reminding me though.

Actually, Ezra and Isaac have been amazing helpers!! Isaac can get the biggest smile out of his little brother. And Ezra has made it possible for me to draw up meds or go to the bathroom or make food or just have a few minutes break because he can so competently care for his brother and soothe him. How did I ever take care of a baby before without little assistants?? They love their baby brother so fiercely.

HOMECOMING

Guess what my favorite word is? (Hint: it starts with "D" and is 9 letters long.)



We made it!!

At Home Oxygen and Med Schedule

We're getting closer and closer to discharge!



This is our at-home oxygen set up!

We have two portable tanks, one with a stand and wheels and one with a backpack. These tanks don't last very long: 2-8 hrs, depending on what his liter per minute (lpm) flow is. We're planning on 1lpm but may get to wean down eventually.

The blue box is his concentrator which plugs into the wall and takes the room air and filters it, taking out the nitrogen and other gases, delivering only oxygen to Job's body.

When on the concentrator, at least, Job will have a 21 ft tube that connects from the concentrator to his nasal cannula, which has a 7 ft tube. It's on wheels but heavy.

Job will have meds every six hours. It's exciting to be down to only 8 meds, 4 times a day!

Cardiac:
Sildenafil
Enalapril

Anti-coagulent:
Lovenox (for blood clot treatment)

Sedation/pain:
Clonidine
Hydromorphone (dilaudid)

Digestive:
Omeprazole

Diuretic:
Furosemide (lasix)
Spironolactone

Discharge This Week!!?!

Job, by so many measures, is steadily improving. Yay yay yay!!!

His oxygen saturation percentage is wholly insufficient for a post-Glenn baby, but the hope is that, with time, this will improve. The current idea is that the clots in his lungs (discovered in his cath on 9/21) are the culprit for his poor saturation and as they resolve his numbers will improve. (Again, he should be mid 80s, not 79-81.)

If his sats don't improve within a month, he'll need a cath to explain why and future possible interventions.

His opiate wean is going well. His bottle feeds (and weight gain) are going well.

The sad news is that he'll be on oxygen for at least several weeks because of his poor sats.

However, there's good good good news too! Job has been cleared to go home on oxygen!!! Likely this week!!!

JOB COULD COME *HOME* THIS WEEK!!! HOME! As in, LEAVE the hospital!!!

Now, as always, this could change. Also, being on oxygen at home won't be fun or easy. But to be AT home??? I can hardly believe it. But I couldn't be more excited.

Exactly when we go home will depend on how Job continues to do this week and when we can get our Home Care oxygen teaching completed as well as any other scheduling sorts of things.

Sunday Night Update (10/9/16)

Job is getting back to his cheerful little self! He just loves interacting with his brothers and sitting up, watching everyone and playing with his toys.

But (did you hear that coming?) his sats (even on oxygen!) are not adequate. Post-Glenn he should sat in the mid 80s. He's in the high 70s.

Time might be the answer. That's certainly what we're all hoping! We know Job is so slow to respond. Maybe his heart and lungs are still gaining strength.

We put him back on spirnolactone, one of his diuretics, to work on his fluid balance because it is true that his sats have declined this week as he's become more fluid positive. Whether or not there's a correlation remains to be seen.

But it seems increasingly likely that we're headed for a cardiac cath early to mid next week if we don't see improvement within the next 24-48 hours.

I guess I'm glad we're at the hospital for a good week anyway for his opiate wean (which is going surprisingly well! but very slow) because it feels like we have plenty of time since we'd be here anyway, even if he was satting at 85.

Buuuttt it's certainly disappointing as we were so hopeful for the Glenn to be more immediately effective.

I'm trying not to be pessimistic... but also trying to be realistic. I would love for Job to suddenly pull his sats up! But I want to be prepared if that doesn't happen without additional intervention.

It does help seeing Job's happy smiles and I'm thankful that we're seeing our baby return to us, gradual as it may be.

Bottle Feeding!! Happiness!

This is Job's third 5oz bottle of the day. There's talk of pulling the NG tube tomorrow or the next day.

Here's a video of Job from last night. Doesn't he look like a different kid?

The short update is that Job is doing really, really well. He has suddenly made very quick progress and we're still in a bit of shock.

We're planning on about 2ish weeks in the hospital still, primarily for his opiate wean.

Update (10/6/16)

The long update:

Job has so rapidly progressed that my head is still spinning. I can't articulate how unexpected and how (medically) inexplicable and just all around amazing his strides forward have been.

On Thursday morning (9/29) Job was still on 8lpm of oxygen support on hi-flow. Yesterday and today he has had several long breaks off all oxygen!

I wasn't at the hospital quite as much this weekend/week because Seth and Ezra were out of town and Isaac could only be asked to stay at the hospital for so long each day (and he can't sleep here). I think that contributes to my feeling of shock and awe because these changes seem even more sudden.

I went home Saturday night (10/1) feeling cautiously hopeful for the first time in two weeks. Job had made several weans on his respiratory support and narcotic doses and his clot looked stable. But he had been so very critical for so long and his team has been so worried, that I was afraid his weans wouldn't stick but the fact that he had weaned at all and seemed to be turning a corner was exciting. He has shown us so many times, however, that we need to carefully temper our expectations.

So when I came back to the hospital Sunday (10/2), I was conpletely astounded that Job was down significantly on his respiratory support. His ND tube was also pulled back from his duodenum to his stomach, as a NG tube.

We had been aggressive with the narcotic wean, so after a fitful night I asked that he get a break from weaning further on Monday (10/3) - even though he didn't score too high on the withdrawal standard. Since he was already at 2lpm and only 35% FiO2, we also decided to get an x-ray to check his lungs, since he seemed so prone to atelectasis. The attending who came on service that morning kept talking about transferring down to the floor but I didn't really believe her. Until I left for the day to take Isaac to co-op and teach piano and got a call mid-afternoon that he was heading to the step-down ward!

On Tuesday (10/4), Job switched from hi-flow to "wall oxygen" with a regular nasal cannula at lpm but 100% oxygen and stayed steady on that throughout the day and half of Wednesday. He kept oversatting in the 90s, so around noon we decided to just turn it off entirely. He did really really well! But my skepticism it wouldn't last through the night was well founded and he had to go back on around 10pm. He struggled to maintain his sats on 1.5lpm this morning but now he's off it again. We're not entirely sure why. We'll see how the rest of the day goes. We have plenty of time to wean down still.

The very best news is that today's echo seems to show that his atrial clot is gone. G-O-N-E. There's some residual thickness on the atrial wall and it's possible that the clot could have dislodged, but it sounds like his body would have already shown us where the clot went. His neurological, renal and cardiac function seems unchanged and so we're hopeful that, in fact, the clot has been reabsorbed and isn't lingering in the body somewhere, ready to cause problems elsewhere. I've asked three different doctors to look at the images and I still need to hear it from Job's primary cardiologist, but this is such thrilling news.

I was going to ask that Job get to bottle feed yesterday, but my favorite OT/PT was off so we're going to wait until today to work on that. Job doesn't recover from surgery well. He doesn't NOT clot well. But he has always fed well and I'm excited for him to give bottle feeds a try after a break of almost three weeks.

I know many people are excited about Job's progress and are expecting discharge soon. It's still going to be a while, though. Actually, yesterday one of the first year residents came in to talk to me and when I told him Job had been off of oxygen for a few hours he said "well, that means discharge tomorrow!" I laughed (and then immediately felt remorseful for the tone of mockery in my laughter) and asked for him to go confirm that with the attending. Sure enough, no. Job will not be discharging today.

He could go home on oxygen. He could go home on the NG tube. He will go home on anti-coagulants and cardiac meds. So by all of these measures (respiratory, digestive, cardiac) he could be discharged. However, he has to stay in the hospital for his opiate wean. He has seven step down doses to get through before he can discharge and at best we could only do one a day. Realistically we probably need to go every other day. He started off on such a high high dose of dilaudid and it's going to take a while to get it down. Watching my three month old baby go through narcotic withdrawals was pretty difficult the first time around and I'm not looking forward to watching my almost six month old baby go through it again.

So. Job is doing much much better. He still has about 1.5-2 weeks left in the hospital, but compared to how much longer we thought he would have, based on how critical he was? 2 weeks sounds like a quick stay. It's only now that Job is doing better that I'm gaining perspective on how much life support he was on and how very dire his situation was. We certainly knew his doctors were concerned, very concerned, but we didn't have the context to know what that really meant at the time.

We are so very grateful for Job's life, especially as we know how close we were to losing it. That he is now progressing at all, let alone so quickly, is a testament of the Lord's kindness to us.

Wednesday Night Update (10/5/16)

Job has so rapidly progressed that my head is still spinning. I can't articulate how unexpected and how (medically) inexplicable and just all around amazing his strides forward have been.

On Thursday morning (9/29) Job was still on 8lpm of oxygen support on hi-flow. As of tonight, he has been off all oxygen support for 8 hours and he's satting in the low to mid 80s.

I haven't been at the hospital quite as much this weekend/week because Seth and Ezra were out of town and Isaac could only be asked to stay at the hospital for so long each day (and he can't sleep here). I think that contributes to my feeling of shock and awe because these changes seem even more sudden.

 

I went home Saturday night (10/1) feeling cautiously hopeful for the first time in two weeks. Job had made several weans on his respiratory support and narcotic doses and his clot looked stable. But he had been so very critical for so long and his team has been so worried, that I was afraid his weans wouldn't stick but the fact that he had weaned at all and seemed to be turning a corner was exciting. He has shown us so many times, however, that we need to carefully temper our expectations.

So when I came back to the hospital Sunday (10/2), I was conpletely astounded that Job was down significantly on his respiratory support. His ND tube was also pulled back from his duwadnum to his stomach, as a NG tube.

We had been aggressive with the narcotic wean, so after a fitful night I asked that he get a break from weaning further on Monday (10/3) - even though he didn't score too high on the withdrawal standard. Since he was already at 2lpm and only 35% FiO2, we also decided to get an x-ray to check his lungs, since he seemed so prone to atelectasis. The attending who came on service that morning kept talking about transferring down to the floor but I didn't really believe her. Until I left for the day to take Isaac to co-op and teach piano and got a call mid-afternoon that he was heading to the step-down ward!

On Tuesday (10/4), Job switched from hi-flow to "wall oxygen" with a regular nasal cannula at lpm but 100% oxygen and stayed steady on that throughout the day and half of Wednesday. He kept oversatting in the 90s, so around noon we decided to just turn it off entirely. And he's done so well all day!! I took the cannula off around 6pm and he's still holding steady. I'm skeptical it will last through the night because I'm always skeptical about Job's progress.

The very best news is that today's echo seems to show that his atrial clot is gone. G-O-N-E. There's some residual thickness on the atrial wall and it's possible that the clot could have dislodged, but it sounds like his body would have already shown us where the clot went. His neurological, renal and cardiac function seems unchanged and so we're hopeful that, in fact, the clot has been reabsorbed and isn't lingering in the body somewhere, ready to cause problems elsewhere. I've asked three different doctors to look at the images and I still need to hear it from Job's primary cardiologist, but this is such thrilling news.

I was going to ask that Job get to bottle feed today, but my favorite OT/PT was off today so we're going to wait until tomorrow to work on that. Job doesn't recover from surgery well. He doesn't NOT clot well. But he has always fed well and I'm excited for him to give bottle feeds a try after a break of almost three weeks.

I know many people are excited about Job's progress and are expecting discharge soon. It's still going to be a while, though. Actually, today one of the first year residents came in to talk to me and when I told him Job had been off of oxygen for a few hours he said "well, that means discharge tomorrow!" I laughed (and then immediately felt remorseful for the tone of mockery in my laughter) and asked for him to go confirm that with the attending. Sure enough, no. Job will not be discharging tomorrow.

He could go home on oxygen. He could go home on the NG tube. He will go home on anti-coagulants and cardiac meds. So by all of these measures (respiratory, digestive, cardiac) he could be discharged. However, he has to stay in the hospital for his opiate wean. He has seven step down doses to get through before he can discharge and at best we could only do one a day. Realistically we probably need to go every other day. He started off on such a high high dose of dilaudid and it's going to take a while to get it down. Watching my three month old baby go through narcotic withdrawals was pretty difficult the first time around and I'm not looking forward to watching my almost six month old baby go through it again.

So. Job is doing much much better. He still has about 1.5-2 weeks left in the hospital, but compared to how much longer we thought he would have, based on how critical he was? 2 weeks sounds like a quick stay. It's only now that Job is doing better that I'm gaining perspective on how much life support he was on and how very dire his situation was. We certainly knew his doctors were concerned, very concerned, but we didn't have the context to know what that really meant at the time.

We are so very grateful for Job's life, especially as we know how close we were to losing it. That he is now progressing at all, let alone so quickly, is a great answer to a great deal of desperate prayer.

Tuesday Night Update (10/4/16)

Frightful likes his new room in River 6, the step down ward.

To go from such robust ICU support down to a mere 1lpm of oxygen in 4 days has shocked us all. I'm still not sure it's real. (But discharge is still a ways away.)

Tomorrow we push for bottle feeds.

EXCITING NEWS (10/3/16)

https://www.youtube.com/watch?v=BgIuXGK6RZo&feature=share

Saturday Update (10/1/16)

Today's plan: constant cuddling (and the three year old will totally allow that, right?).



Job has been tolerating his narcotics weens pretty well, alternating clonadine and dilaudid weens every other day. So far he has yet to experience his harsh withdrawals but I expect that will happen soon when we get to lower doses.

He is satting in the 80s even when upset. IN THE 80s!!!! And he's down to 5lpm, 35% FiO2 on his CPAP. It's amazing. I'm still in shock. He hasn't held on to sats in the 80s since early July.

The plan is to pull his PICC line out of his heart today, essentially making it just an IV line instead of a central line. I want it gone asap because I am now so nervous about him clotting. But it has been really nice to have the access for blood draws instead of pokes each time. With this we'll switch to lovenox injections instead of the heparin drip. They're still having a hard time getting his levels stable so he'll keep the line until they are able to get his dosage stable because until then he needs blood draws every 4-6 hours to check levels.

I'm starting to let myself feel hopeful again. But I'm scared to too, because historically every we start to get excited about his progress is when something else goes wrong (and for the last 5 weeks, the new bad news always hits Monday afternoon).

Life with Job is a roller coaster of emotions! But we'll never be bored?