Siblings and Friends of CHD Kids

One of the parents of another HLHS kiddo posted this drawing and story this afternoon. I just thought it was a perfect example of how very deeply this diagnosis changes lives. I see this in Ezra and Isaac in particular, of course, as they too carry a heavy responsibility for their brother's medical care.

Elijah is sleeping over tonight at Grandma's house. As I was packing his overnight bag, I showed him his bottle of aspirin that he takes every evening for his heart condition, reminding him that he needed to take responsibility to take his medicine. When I asked Elijah if he thought he could remember that, he hesitantly agreed that he "probably would." About 5 minutes later, Moriah comes back with this picture. She explains to Elijah that it's a schedule so that he would be sure to remember all his medicine. The "X" shows not to take the pill with dinner, and the "1" on the right above Elijah holding a bottle of tiny pills indicates to take the pill before bed. Then with a big smile on her face, Moriah hands her brother the drawing and tells him not to worry because now he will never forget when to take his medicine.

And that's what it's like having a sibling with a chronic health condition. Moriah is always protective of her big bro - asking questions about his health and concerned about whether he's being taken care of. #heartsibling #chdlife #sweetsister

Remarkably, a few minutes after I saw this post, a boy at the YMCA park came up to us and asked if Job had an oxygen tube. We get a lot of these questions (which we all prefer to the parents rushing past us as they shush their kids who are quite audibly asking why "that baby has that thing in his nose"), so I assumed one of us would say yes and the boy would move on to play.

Instead his eyes lit up and he excitedly told us about his friend Madison who has an oxygen tube. "She has half of a heart!" he exclaimed, "and so she needs oxygen to help her. At school she has a big tank she needs help pushing around, but when we go out for recess, she gets to wear a small tank in a backpack. Sometimes she get really tired from running though, so then we stop running and sit and talk to her."

When we were at the Y, hearing the story for the first time, Ezra and Isaac and I were just really excited! Usually we get blank (if not horrified) looks from people who ask us what's "wrong" with Job. But recounting it now makes me tear up because it was so encouraging to get a glimpse of a sweet friendship full of so much sympathy and understanding for and of CHDs.

Out of the ICU!

Job moved out of the ICU this morning!

He has stayed stable on 1 lpm all day, but he is enjoying pulling off his cannula (which makes him desat and alarm). The plan is for him to go home on 1 lpm and work on the wean at home.

We're enjoying life on "med surg" (medical surgical) floor but it's getting harder to entertain Job. He's bored and wants out of here! Cardiology is pushing to make that happen tomorrow or the next day.

Job got a new bed and I had to include it in the photo because it looks so weird! Apparently, the vinyl rolls downs and latches on to the railings to keep toddlers in bed.  I have always wondered about future hospitalizations when he's older and more mobile...

Home Again!

Job came home yesterday! It's just been a neverending whirlwind of activity since then, so I forgot to update or take a photo of him out and about.

He couldn't be happier to be out of that hospital bed and keeps laughing everytime he sees one of his brothers or grandparents or the dog.

He's totally back to himself! No cold symptoms whatsoever. He's on 1 lpm of oxygen and will be for a while - but otherwise you'd never know he had such a difficult week!

Happy Baby Again

He's happy!

Every few hours yesterday we weaned down on Job's flow and over the night he weaned down to ONE LITER! So this morning he got to switch over to the regular nasal cannula! No more hi-flow!

Once we hit 3 lpm, we started going up on his FIO2 to go down on flow, so he's now at 100% oxygen on that 1 lpm. I interrogated the RTs yesterday and last night and learned so much about oxygen support! It helped me finally put into context all of the cannulas and masks and vents Job has had this year, especially the rebreather that saved Job from being intubated in the ER.

He's also gone 36 hours without any pain medication (this hospitalization was only Tylenol and Motrin, but still, yay!).

Improvements

Job isn't back to his happy self quite yet, but SO MUCH has changed in the last 30 hours!

We've weaned down about .5 lpm at a time and are currently at 5 lpm! Slow but steady! 50% FIO2 still.

Even though he was technically on too high of flow to take food by mouth, since he has always been a good eater, we started oral feeds!



In rounds yesterday morning I requested we start bottle feeds and in today's rounds I requested we start purees. Cardiology backed me up as the PICU team was a bit skeptical, but he's done well! And the look on his face when he got his first taste of carrots?

He yanked out his NG tube last night to ensure no more tube feeds.

We haven't needed access while up here on the seventh floor, but it's standard proceedure to have two points of access while in the ICU. Job, like a lot of kids, blows or pulls out his IVs and is a tough stick to begin with, so I'm always protective of his IVs and have worked double time teaching him "no" and "no touch". We don't want any more pokes!

(Side note: in both the neurological and speech assessments we did last month, I got a lot of questions about whether Job understands "no" and I realized we never told him no. Since he's immobile we can control his enviromoment and just never let him touch or do anything he wasn't supposed to. But of course that won't last forever and I'd been trying to manufacture situations to teach him various different words, including no. I mention this because it was such a poignant realization that we skipped such a basic developmental milestone... And will skip plenty of others.)

They took out his IJ (neck IV) yesterday because that vein drains directly to his lungs and we didn't want to mess with that (though it was the only vein we could get access to in the ER when we really needed access). His foot IV is getting really swollen, so IV therapy said I could talk to the attending interventionist about taking it out and just poking him again for a new IV if we need emergent access. That will be a tough decision when he wakes up from his nap.

The attending told me this morning that a lot of the typically developing kids that come in with human metapneumovirus have to go on the ventilator, which helped put into perspective how nasty this cold is.

I'm thrilled (and shocked) at how quickly things are progressing right now. The hope is to discharge Wednesday?

But Dr. Penelver (the attending cardioloist this week) said that most likely Job will be going home on about 2 lpm of oxygen and it will take a good 6-8 weeks to get back to where we were before this cold. Certainly that's only a guess, but realizing we essentially have to start the weaning process all over again is very hard news to swallow. I have been dreaming of a luxurious summer OFF of oxygen.

Buuuttt, this is when I remind myself that only three days ago we were fighting pretty hard to get Job stabilized.

Visitors

Being in Tacoma's biggest perk is the visitors!! We got to see Lindsey Kravitz and Debbie Darms and Leslie Yohann today - and these two guys. It might have been that his Motrin had just kicked in, but Frightful smiled and laughted at their antics like he does for no one else.

Diagnosis

We have a diagnosis! Human metapneumovirus.

A cold.

They expect we'll be here a good 5 days for respiratory support.



His echo came back "the same" as his last echo two months ago. There are four SCH cardiologists that work out of their Tacoma and Olympia clinics and also serve Mary Bridge, so today we saw Dr. Powers who reassured me that his cardiac function is good.

The concern for Job's heart when he has a cold is that the passive blood flow to his lungs has a harder time getting through because of the cold crud and congestion. Thus his lungs struggle to be properly oxygenated and his sats drop.

Job's teething too, so we're on a regimine of alternating Tylenol then Motrin every three hours because he's so miserable. He's so much stronger and more opinionated than in previous hospitalizations, so he's trying really hard to yank stuff off him. I'm trying to just hold and comfort him so we don't have to use restraints.

The Story of This Hospitalization

Here's my long update with lots of details for those of you who have been asking for them. For everyone else, Job's doing much, much better but will be at the hospital for a few days!



Job is now sleeping peacefully. He's on a great deal of respiratory support (85% oxygen - compared to the 21% "room air" that you and I breathe - at 10 lpm of flow). He received a broad spectrum of antibiotics in case of pneumonia. He received some steroids to help with his throat inflammation and hidden those airways. And he receieved a dose of Tylenol.

He has a NG tube and two IVs as well as the hi-flow nasal cannula. We're waiting on the results of his viral panel and echocardiogram.

Since this is a respiratory (rather than cardiac) issue, SCH was comfortable allowing us to stay at Mary Bridge here in Tacoma as their PICU ought to be sufficient for Job's needs. We could have insisted on transport to SCH after he stabilized, but there's just enough risk in doing so that I couldn't justify it for a non-cardiac issue. It is odd being in such an unfamiliar location with such unfamiliar names and faces, though!!

Yesterday Job had a cold with a mild cough and was uncomfortable, but kept his sats up sufficiently until this morning when I called in to SCH and they told us to come up to their ER.

Typically the oxygenation of your blood should be at 98%. Job, because of his CHD and subsequent surgical reconfiguration of his circulation, will always live at 75-85%. He has needed oxygen support since September to maintain that 75% but has been weaning off of said support since his axillary fistula in March (from 1 lpm to .25 lpm).

When he got sick, I turned him up to .5 lpm. This morning, when I saw his increased work of breathing and growing cyanosis, I turned him up to 1 lpm. He was satting at 55% and the increase of oxygen didn't help, so I started packing our hospital bag while calling in to cardiology.

They told us to come in to their ER and I turned Job up to 2 and then 3 lpm without much responsiveness. My dad was able to drive the three boys and I, so we headed north on Portland Avenue while Job's sats dropped. By the time I spoke with 911 (so many rings!), Job was hitting 23%.

They dispatched an ambulance and we pulled over. I had Job up to 4 lpm on my low-flow tank, which is about as high as I can go through his regular nasal cannula without making him so miserable that it's no longer effective. The paramedics got Job and I into the ambulance and put him on hi-flow at 10 lpm with a mask and he finally started responding.

I held him, sitting on the stretcher, while they sped to Mary Bridge. I've never been in an ambulance before but I was surprised by the speed! It was even a bit hard to stay on the stretcher as they hit some of those corners!

We were rushed into the ER and his room filled with people. I had been relaying information to the paramedic in the ambulance with me, so they were pretty well prepared for us. I probably have a bit of prejudice against any hospital that is not my beloved Seattle Children's, but I was so pleased with the care Job received from the paramedics and ER staff!

There have already been lots and lots of calls and emails flying between SCH and MB about Job, so it seems as if the two providers do and will communicate well. A cardiologist from the Tacoma SCH clinic came by and assessed Job and is reading his echo right now.

Job hasn't slept much today, so after his NG tube placement he cried himself to sleep. They're going to start continuous feeds pretty soon, which is always preferable to IV fluids. Once he gets down to 6 lpm on hi-flow (down from the 10 he's at now), he can have oral feeds.

Ambulance Ride to the ER

Job got really sick this morning.

On our way up to the Seattle Children's Hospital ER, we had to call 911 and pulled over for an ambulance to take us to Mary Bridge.

Job is now stable but we'll get to spend a few days in the hospital. SCH will decide if they want us to transfer up there for care.



So far all signs point to respiratory rather than anything cardiac.

Mid May Update

The boys took me out for a picnic the other day. It's fun to go places as a family! I marvel at the freedom to do so, compared with where we were a year ago. Last May we couldn't even hold Job without the permission and assistance of a CICU nurse! I feel like a broken record sometimes, but it is so amazing to me that Job is able to do more normal things these days. Thank you, Jesus!

The plan is for an echo and chest x-ray and dietitian and cardiologist on Thursday. Job's feeling under the weather, but the plan is to proceed anyway.



Back when we were going to weekly (if not twice weekly) cardiology appointment, the thought of going almost two months between appointments was unfathomable! I am so glad we have that luxury right now... But it has actually been hard to wait for a cardiology appointment, so I'm hoping we won't have to cancel!! I have no reason to suspect something is wrong with Job's heart at present, but since he hasn't been assessed for "so long," I am looking forward to this appointment very, very much.

GI Update

GI doesn't want him to go off his Miralax and Erythromycin and Omeprazole yet because his digestive system isn't (and won't ever be) getting enough oxygen. She wants to give him time to get stronger before we try to wean off the meds.

I do trust Dr. Len, but I would like to talk to Cardiology and I'd like to do some research of my own in hopes of dealing with his gastric issues off of these medications.

Job's also not quite gaining enough weight, but I'm less worried about that than his doctors are because our boys are always in the very low percentiles of height and weight. Job is steadily gaining and he's eating all sorts of foods now and enjoying them!

He's not doing quite as well on his oxygen wean any more either. We'll discuss that in a great deal next Thursday with Cardiology, but it could be that we're all just getting impatient and he simply needs more time. I know I had my hopes up that he would be off by this coming clinic appointment and am now disappointed that won't be happening. I refuse to get anxious about it yet, at least until we see Dr. Files next week, but I'm having to preach to myself quite a bit to remain hopeful at present.

Job won't stop moving though! He can't actually move more than a few inches and even then it's less intentional than it is incidental, but he's getting closer and closer! He wants to crawl (or at least move) sooo much!

Three Boys in the Tulips!

Three boys in the tulips!

Beginning of May Update

It's been good but quiet here!

I took the little boys shopping the other day and Frightful absolutely loved "driving" this cart. I think he felt like a big boy, sitting next to his big brother! It's hard for me to let him do things sometimes, because I have this long list of concerns... But I've been convicted lately that I need to treat him like a big kid instead of a baby and he's never been so happy!

He understands so much more than I give him credit for! The big boys are good to explain what they're doing or learning to Job, but I need to do the same. I've been particularly focusing on his receptive language - being consistent with the words I use to describe what I'm doing with him. I already see a difference in his responses when I'm talking to him about what I'm about to do.

We had our speech pathology evaluation almost two weeks ago but I don't believe I wrote about it. Job qualified for services, as we expected him to. He's on the wait list but ought to be on someone's caseload by the end of the month because he's high priority due to his age. Speech therapy will focus on his expressive and receptive speech as well as some feeding skills.

It was fascinating to hear the pathologist talk about how Job's VCP affects him. We'll be learning a lot more about it soon, but she said that his paralysis affects the quality of his voice more than it affects his ability to vocalize. The reasons he's been slow to make vocalizations are multifactorial and we'll be exploring this quitr a bit in therapy.

That it's spring and there's theoretically less sickness going around is helping me a bit braver with Job. But we certainly do a lot of shopping cart cleaning, for example, since he is still so fragile.

We continue to work on weaning off oxygen, titrating between .5 and .25 lpm. It's a slow but steady process. I've said it before, but I'm still in shock that the fistula worked! I shouldn't be! Was I doubting his cardiologist? But we've been on oxygen for so long that I really didn't expect to get off it.