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

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.”

Confucius

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

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

To Fight the Unbeatable Foe

Some battles can't be won.  Some foes can't be beat.  But we have to fight anyway. 

We've had a rough couple weeks, and now the pain is between my ears. 

It's his heart, again, still, always. and there's not a lot we can do.

Aaron was doing well, quite well, and then he wasn't. 

He's also gained quite a bit of weight, almost 6 pounds since mid-May, and only grown about half an inch.  All in all, not good signs, and then we add in significantly increased oxygen needs, lungs sounding okay (for him) and no sign of illness.

Over the past two weeks, it's gotten worse.  We've had to use his emergency tank, a lot of albuterol, and bag him kinda often.  We do have a couple new nurses, and maybe this is just his way of breaking them in, but seriously, he doesn't need to break them as well.  

It's been rough. He was off school on Monday for the holiday and I kept him home Tuesday and Wednesday.  Wednesday was actually a good day, finally, but it didn't last.  Wednesday evening it was too much.  Once again, bagging and low sats so I gave up and we went in.

In the emergency room, his viral panel was negative and his x-rays looked like they always do.  But his heart numbers, well, they were worse. We have a tiny bit of room to move up on some of his heart meds, but not a lot.  As we went over his nutrition, it appears that he's getting too much free water, so we've revamped that as well.

All in all, other than trying to redo his food and bump a couple meds, we can't do anything.  And he's not sick, so it's not like we're hoping things improve.  We have added another (yes, another) machine, a cough assist which will help clear his lungs and maybe help that way.  

And we came home about 48 hours later because, as I said, there's not much that can be done.

But the reality is, he's getting worse.  It's still pretty slow, but it's clear and noticeable.  

His doctor said we're probably going to have to accept still lower sats.  I remember when he would drop below 90% and we would go in.  Then it was 85, now it's 80%.  I told Dr. D that when we drop into the low 70's, he gets ugly colors.  He agreed, it isn't pretty to see someone that cyanotic, but some kids still handle it.  And yeah, he probably will.  I don't know if I will.  Especially since I know that it will just continue.  

And I find myself feeling a bit like Don Quijote.  It's an impossible fight, I'm tilting at windmills, except they really are monsters, and they are turning me on my head.  But I can't stay down because the fight goes on.  And fight I must because he does.

It's been ten years, 122 months (today) since he was born and his clock started ticking on this earth.  In reality, they told us that day might never come itself, and somehow in my naivete, I thought four months would be enough, I would be happy if he could live four months.  I was wrong, so wrong.  It's been more than 30 times that and it's not enough.   

So this is my quest, to follow that star, No matter how hopeless, no matter how far . . . To be willing to march into Hell for a Heavenly cause.

Because sometimes it is Hell, to hold your child, to administer treatments that he hates but endures without complaint, to know that he will be taken from you, far too early, no matter how far away that is.  

So we'll keep making memories, having fun, getting out when it's safe.  

And I'll keep fighting, I will be true to this quest, this calling.  I will keep working, praying, learning and trying, because he deserves it.  He deserves my best efforts, and I pray that when that day does come, I will know that I have done what I can. Because I know that the world is better for Aaron being here, my family is better for his life, and I am better as well.

This is my quest, to follow that star ...

No matter how hopeless, no matter how far ...

To fight for the right, without question or pause ...

To be willing to march into Hell, for a Heavenly cause

The Impossible Dream