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.

Food and Oxygen Wean

Somebody is loving eating like a big boy!

We're offering something off our plates at almost every meal, which is fun. He daily inhales 10+ ounces of fruit/vegetable purees and eats at least one scrambled or hardboiled egg, as well as various chopped up vegetables and beans. And he hit 18 pounds! Woo hoo! 22 lbs is my goal weight for him, since that's the minimum he needs to be for the Fontan. If (when) his tricupsid valve fails, I want him to be big enough to do surgery!

He's been taking several breaks off oxygen every day and today went 2 hours off oxygen before his sats dropped to 68. He's been satting in the high 80s while on .5 lpm, so I finally dropped him down to a .25 lpm for the night. He's sleeping with his pulse ox probe on his toe all night, so it will alarm if he drops below 75% oxygenation.

I've probably resisted dropping down on his O2 for too long, but it feels so weighty to go down to such a low amount of support. Even though probably been he's physically ready, I haven't been emotionally ready?