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!