Tuesday, October 6, 2020

Pixie Dust


It’s happening, it’s really happening! 

We’re getting sprung this morning (or afternoon).

See that dark red vial of “stuff”?  It’s packed red blood cells, and I’m convinced, a bit of pixie dust.  

Aaron is doing sooooo much better.  In fact, if I hadn’t had to work last night, we probably would have just gone home. But by the time we made it through the 24 hours post-transfusion, there wasn’t time to get us home before I was working.  So he stayed the night one more time, but this time on the floor.  

I called the hospital at break and he was awake and playing on ten liters.  He was still on ten when I got back about 3 am, but asleep, so I asked if we could turn him down.  He ended up on 4, FOUR liters!!  And there he stayed until he was getting breathing treatments this morning when he came all the way up to FIVE!!!  


So we’re outa here.  He’ll be at home for at least the next few days and then after that, we’ll see.  He’s continued having afternoon fevers and those may stick around for the next few weeks.  In a normal year (what’s that anyway?) it’s not cool to send a kid to school with any kind of fever.  And this year?  Yeah, just not happening.  

But that’s okay.  We’ll be at home where we can see family again, I won’t have a commute, and I can fall into bed just after signing off work.  A real bed, you know, not the chair that folds down that has been masquarading as a bed for the past 2+ weeks.  It’s good, it’s very good.

“All you need is faith, trust, and a little bit of pixie dust.”

Sunday, October 4, 2020

Inching Forward

He’s doing a little better, or at least his labs look that way.  They’re all coming back absolutely pristine, including inflammation markers.  Those go up if the body is stressed at all, and they’re currently at 0.  White blood count has come way down, well into the normal range now.

He’s still mounting a fever in the afternoons, and the oxygen needs go up in concert with the fever.  The only thing that anyone can come up with now is that it may be an antibiotic induced fever.  Frankly, I kinda like that answer. 

His hematocrit is a bit on the low side, especially for a cardio kiddo, so that very dark line in the picture is a unit of blood that’s currently draining into him.  (So now he’s a vampire??  I guess he’s not drinking it so maybe not.)

Anyway, without anything else that can really be done for him, we’re probably heading home soon, probably Tuesday morning, possibly tomorrow.  We’ll see.  Each time he gets sick like this, it’s harder for him to fight it off, fight back.  But it looks like he’s done it again this time.  

And this weekend was General Conference.  I love the talks, the comfort, the inspiration.  And we’ve been here before for several.  But I think we’ve at least watched more at home than we have here.  With everything going on, I wasn’t able to listen as well I would like.  So grateful for the technology that let’s me go back and listen again, over and over.  It strengthens me, inspires me, and helps me to move forward.

I assure each one of you that the Lord knows you, 
that He is aware of your concern and anguish, 
and that He loves you — 
intimately, deeply, personally, and forever.
M. Russell Ballard

Friday, October 2, 2020

Shooting in the Dark


Just a quick update, and a plea for ideas if you’ve got them (especially trach or Trisomy moms).

We’re here, still, for who knows how long.

He’s completed his bactrim antibiotics (high powered, broad spectrum, should get anything antibiotics), labs look good, and have continually trended in the right direction. White blood count is pretty darn normal at this time.  We’ve repeated labs ad nauseum, x-rays, repeat viral panels, just sent (another) protected trach brush.  Cleaned out and looked at his ear drums. Looked at urine, too, and his BMs.  Everything looks good.

But not only has our progress stalled, we’re moving backwards.  Oxygen is back up.  Fevers are returning, 100-101 for the past few days, but 102 today, pretty much afternoon into nighttime.  Last night he acted like he hurt, he was crying.  The team did a complete head to toe exam and couldn’t find anything.  He’s played a little today, but not much.  We’ve looked at everything we can think of.  

And yet, here we are.  It’s been two weeks since he started having fevers (almost to the hour).  Sigh...

Our minds have the need to know. When we don’t know, we make assumptions —
they make us feel safer than not knowing.  And we are pretty much
always making assumptions. 
Miguel Angel Ruiz

Wednesday, September 30, 2020

Not Quite There...

Just kinda a down and dirty quick update.  

Aaron is still sick.  He’s still in the PICU.  And while he’s “better,” he’s not “all better.”  

He’s still running a fever most afternoons (I think we “skipped” his fever on Monday, that’s all) although it’s much lower.  It usually stays below 101.   He’s a little more playful, but sleeps most of the time and isn’t super interactive when he’s awake.  He is back on his home vent (as opposed to the PICU vent) although at much higher oxygen flow.

His labs are a bit wonky as well.  They’re trying to balance his electrolytes as his sodium can’t make up it’s mind where it needs to be, and it also wants to be lower than we want it to be.  Fortunately, he has a deep IV that we’re able to draw labs from, so at least he doesn’t have to be poked multiple times a day.

Long and short:  I don’t know when we’re coming home.  It’s been a long time (almost 2 years) since we had a stay longer than a couple days, so I guess we were due.  It’s harder since I have to go home most evenings to work and then drive back up in the wee hours of the morning.  (By the way, did you know freeways around here are pretty much empty at 3 am?  Like on Tuesday morning, I was almost to downtown Salt Lake before I saw any cars, and then it was just a handful.) 

But I’m grateful we still have a reason to need to be in the hospital.  I’m grateful it’s not behind us forever.  There’s only one way for that to happen, and I’m not going there right now.  So we’ll keep plugging away.  I brought his favorite movie (Peter Rabbit) up and we’ll put it on when he wakes up.  He’ll sit in his wheelchair and even maybe throw pies at his brothers on his computer.  It’s just going to take more time... (Too bad mom is not the patient sort.)

Who forces time is pushed back by time; who yields to time finds time on his side.
~The Talmud

Sunday, September 27, 2020

Itty, Bitty Baby Steps

There’s progress.  It’s slow.  It almost feels glacier-ly slow. (Is that a word?  You know what I mean.) But it is there.

It’s hard to update when I feel like there’s almost nothing to say.  But his fevers are trending lower.  Yesterday he woke up without one, and when it did go up, it wasn’t higher than 101, and it responded fairly well to Tylenol.  Given his heart and respiratory rate, he’s going to have another one today.  You can see it coming.

He does have a lot of bruising.  When he gets a virus, his platelets drop significantly, so as he moves, as we move him, as they do blood draws, etc, the tiny blood vessels beneath his skin break.  It’s not nearly enough for them to be super worried, but they are watching his labs. 

He is still soooo very tired.  But he played for about 15 minutes yesterday before going back to sleep.  It’s not much, it was so short, but he did play.  Before, he would sometimes hit his toys, mostly by accident, or just here and there.  Yesterday mid-day, he was purposfully grabbing and whacking them, and then he was gone again.

When he does desat, he’s not turning ugly colors (as much) as he was before.  He’s still dropping into the 60’s and taking time to recover, but we’re not bagging him, and his color stays (sorta) normal.  We might even need to put clothes back on him soon to keep him from pulling at his g-tube and the leads they put on him to watch his heart rate and rhythm.  But so far, he’s still too tired to really do much with those.   

So there’s that. Not much else.  Child Life made him a cute name banner with Peter Rabbit stickers.  That is his FAVORITE movie.  90% of the time he chooses it.  Good thing it’s got awesome lines ‘cause I think everyone in the house can pretty much quote it verbatim.  

I’ve been able to go home and work the last three days as he’s gotten more stable.  It’s weird, odd, and not a little discomforting to look across the entry into his room and see it dark, hear the silence where we usually have machines humming away.  I’m anxious for the day that it’s lit up with lights and machines and a silly boy moving and shaking in there again.  It’s too quiet. 

“It does not matter how slowly you go so long as you do not stop.”

Thursday, September 24, 2020

His “Spark” is Back


Aaron is one sick little boy.  

The past few days have been hard, very hard.  He’s fevered pretty consistently, and usually between 102 and 104.7, even on all the fever meds he could be given.  On Tuesday, he stayed between 104 and 104.7 in spite of piggy backing Tylenol, Motrin, a cooling blanket turned way up, ice packs, a fan, and no clothes besides a diaper.  

He’s not been interactive at all, no toys, no playing, and no smiles.  Just sleeping or lying there watching.  

He did grow out a nasty bacteria from his trach called Stenotrophomonas, which isn’t always susceptible to the high-powered general IV antibiotic they had him on, so on Tuesday, they added in another one as well.  

But Tuesday, Tuesday was not a good day.  He was maxed out on his oxygen and we still ended up bagging him several times.  Multiple times the nurses were calling for respiratory therapy and doctors showed up as well.  I tried to go home to work (don’t really have any time off yet) and came back after just a couple hours.  Things were bad, really bad, and I was discouraged.  

For the first time in years, I’ve put up collages of him being happy, playing, interacting with siblings. It’s important for staff to be able to see him as he really is, goofy, funny, outside, and not just lying sick and still in a bed. Usually, that’s not an issue.  He’s that way when he’s here too.  Not this time.

But last night, we got a glimmer of our Aaron.

One of the times we called respiratory, we got an RT that has known Aaron from the beginning

And as S. left, Aaron gave him a smile.  The first smile we’ve seen in days. 

As the day wore on, we got a few more, and then he started playing with his toys.

Don’t get me wrong.  He’s still very, very sick.  He’s on the hospital vent between 60 and 100% oxygen.  He’s still running high fevers.  He’s not that playful. But there’s something, and I’m grateful for it.

We’re not going to get out of here any time soon, unless he decides to start sprinting to the finish line. This kid usually takes his time.  However, we will get there, we will make it home. And that’s a good thing.

“The smallest spark can become the greatest light.”

George E. Miller

Monday, September 21, 2020

Unseen Blessings

Last week I was so discouraged. Last week I was so down, couldn't really see the point. After all, there wasn't anything we could do to stop the progression. Slow it down, yes, but stop it, no. 

And then there's this week. Here's how things went down.

Aaron had a really good start to the week but then started getting sick. I didn't realize it at first because the only sign was that he was more tired. The med changes should have made it easier for him, given more energy, but he doesn't always work with the plan, so maybe? But I hadn't gotten around to looking things up yet. 

And then a low grade fever began Friday and he needed  more O2 and really started struggling. We did what we could, Tylenol and Motrin, increased breathing treatments, and tried to figure out if/when he would have been in contact with someone sick. (You know Covid was front and center in my mind, and my fears.) 

Anyway, we made it through Saturday and my first swing shift for work but he was pretty much maxed out on what we could offer. So late Sunday morning we loaded up and came up to Primary's. 

I called the ER on arrival because if it was somehow Covid I didn't want to bring him in and contaminate everyone and everything. The vent would actually make him a super spreader because it aerosolizes his breaths, although by then he was struggling enough that he was on a bag instead of the vent anyway. 

So here we were with fevers that we were treating with both Tylenol and Motrin, piggybacking them, some minimal secretions, and a very sad little boy. 

It turns out he's got rhino and pneumonia, but not Covid (thank heavens!).  So we'll be here for a little while until he is better, hopefully not too long. I'll still need to work so I'll have to go home for that Mon, Tues, Thurs, Fri & Sat. But he'll get through this. 

And that frustrating, discouraging hospital stay 12 days ago? Well, I'm seeing that a bit differently. See, both times we came up with higher oxygen needs and struggling, but the first time he was also heathy. Those changes last week made all the difference in his ability to endure and hopefully fight off this illness.  What I saw as a setback turned out to be a blessing.

"The degree to which I am blessed staggers me… 
the degree to which I take that for granted shames me.”
― John Green