Happy Halloween??

Apparently it wasn't anxiety talking. (Or maybe it was and she was right.) 

We made it 25 hours.

Sunday was good, really. But about 2 am on Monday he needed more so I gave him a breathing treatment and turned up his oxygen.

And at 4 am.

And at 6 am when it was time for his regular breathing treatment and vest anyway.  It was scheduled for then, but he was also needing it. 

He was supposed to go to school, but at the last minute, we decided against it. Good thing.

We tried everything to keep this kid home. 

I ended up having to cancel my last appointments for the day and headed home.  We discussed ambulance vs bringing him up but that would have still meant we needed at least two of us because he was not tolerating being on his ventilator.  Looking at the time, we opted for the ambulance.

And then because he was pretty tenuous, they opted for the lights and sirens. 

Sigh...

It's a little frustrating. By the time we got upstairs (and it was really only a few hours, less than 4 from when we walked in the door) the specimen that was pulled from the trach was already growing out garbage. 

We didn't fully treat the tracheitis. Oh, we thought we had, but there was this niggling doubt in the back of my mind. I didn't have a reason. His white blood count had trended steadily down into the normal range. He wasn't quite a stable as he usually is. But here we are again.

Got home about 4 on Sunday. Called the ambulance at 5 on Monday. 25 hours. 

And now we're in the PICU on a hospital vent because he can't tolerate the regular one.  He isn't tolerating his vest treatment.  He's not being fed at the moment because digesting food also takes oxygen and energy and so I stopped that yesterday afternoon as well. And he's tired. 

So I guess it's tricks for him instead of treats. 

**********************

I'm sitting here trying (sorta) to not feel put upon and sorry for myself and looking for a quote ('cause you know I always have to have one.) Staff comes to round and just as the doctor speaks, the code tones sound. They're gone, and I pray for the child, the family, the staff. And somehow my problems don't seem quite so big or important.

It's no coincidence that four of the six letters in health are "heal." 

~Terri Guillemets

Coming and Going (But Mostly Going!)

UPDATE: We are packing up and heading out as soon as we can get meds taken care of. 😊 In the back of my mind, I do wonder if he's truly ready, but I think that's anxiety talking. If I listened to her, we'd never leave. 

We had visitors yesterday! 

It was a rough game for the "good guys." Both sets of our "good guys." Both BYU and the U of U lost pretty badly, but the U's game was right here so afterwards, Mary, Michael, and Livi came to say "hi." It was fun to see them and chat for a little bit, and I think it did Aaron good to see faces besides mine.  Plus it gave them a chance to warm up. (It's cold out there!)

But Aaron? Where are we? 

Well, we're still on the floor. Yesterday I wondered if we'd stay here.  He had an issue during the afternoon where he ended up on 15 liters and then had to be bagged, and even then wasn't really interested in coming back up. The doctor came and we gave an emergency dose of his heart med (which he really loves!) and things settled out. 

In fact, they "settled out" so well that instead of mid to high 60's on 15 liters, he was high 80's to low 90's on 6. Serious change!

And the rest of the day went just fine. This morning we pulled labs again and his white blood count is down further. It's actually back in the normal range again! It turns out (don't know why I didn't think to look at this before) that pulmonary hypertension can influence white blood counts. I mean, the WBC is mostly a stress or inflammatory marker so it makes sense. And we know that when he's getting over a virus or infection his PH spikes. 

I think we've worked it out, although we're not sure what "it" was exactly.  I mean, he grew out "stuff" from his trach and he did get better with the antibiotics, but there's still the question of what exactly it was. We have (yet another) game plan for him.  A new inhaled antibiotic was intended only for symptomatic use, meaning that we would only use it when he has symptoms of tracheitis. We don't want him to become resistant to that, too. But at the same time, he needs to not be getting repeated infections every few weeks. So now we will use it cyclically, 4 weeks on/4 weeks off, until we can space his hospital admits farther apart. 

I'm hopeful this will work. Years ago when we started Tobramycin, he had been hospitalized four times in five months. We went almost two years before his next pneumonia. There were other things in there, including a few surgeries, but no pneumonias. 

He needs to have a long healthy spell to gain back what he's lost the last couple years. They've been pretty rough. 

So the plan is to watch for the morning and into the afternoon and then head home. Fingers crossed.... 

"The thrill of coming home has never changed."

Guy Pearce

Little Things Aren't So Little

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

He finished his antibiotics on Wednesday.

Labs looked really good!

He didn't.

Both the doctor and I weren't thrilled with him.  I mean, he plays, he's interactive, but not nearly as much as he usually is. He's more tired. 

So the plan was finish antibiotics on Wednesday. Do a CBC to check his white blood count Thursday. Go home on Thursday as long as it looked good, and it should, right??

Nope. It was up again this morning. Not a lot, but some. So out of an abundance of caution ('cause I really HATE bounce backs) we decided we'd do another CBC this evening about the time I got off work. If it was good, we'd go home. 

We're not going home. 

It's up even more. (12 and above is considered elevated. It was 14 this morning, 18 tonight.)

So yeah...

But the title? Seriously, little things are so big!

When the WBC came back at 18, the doctor decided to get another chest x-ray. Usually they just bring a portable machine. I mean, it takes quite the entourage to move this kid when he's inpatient: nurse, tech, RT and often one or two others as well. But I guess the doctor wanted the more precise x-ray so they took him downstairs.

As I came through the door, the tech who had been on the unit with him was leaving for the day. She stopped me to tell me they had taken him downstairs for x-ray and were almost done, but that his room was empty. She wanted to give me a heads up.

Do you have any idea what it would have done to me to get up here with an empty room and no warning?? I mean, I would have gotten over it quickly, but still, those heart-stopping few seconds before I knew...

Such a little thing she did. A few seconds is all it took. I'm sure she was tired and it wouldn't have ultimately changed the outcome. But with everything else I had going on, it would have taken a bit of a toll. One more stress. One more anxious moment. And she prevented it. 

Then there was dinner: a group came and put together a fairly simple but yummy meal. Another stress break. Something else I didn't have to think about. So grateful for their service.

Those are the things that make keeping on happen. They are the moments that brighten the heart and lift the soul. So many people tell me they "don't know how you do it."  Well, this is how. I'm blessed and lifted by so many.  And I'm so grateful. 

"While it may seem small, the ripple effects of small things is extraordinary."

Matt Bevin

Kinda Frustrating

Code to enter the unit. 

This is hard. 

Not hard like it was in June, or last year.

Or lots of other times.

Hard as in it looks like maybe we won't be home on Tuesday after all, and I struggle with changes like that.

He started creeping up on his temp over the last couple of days. Not really a fever, just higher than he had been. But today, today he ran a fever.  Which lead to x-rays and lots of labs. X-rays that showed possible/probable new pneumonia.  Those are NOT the changes we were hoping for. His white blood count has gone up as well, although it's still in the normal range as well.  He's continuing to have his cranky brain spells where he drops his sats by up to 20 percentage points, but that's kinda expected since he's sick.

Tomorrow we'll get infectious disease (ID) involved. We need it NOT to have to take Zocin off his list of antibiotics. The number we have available is getting smaller and smaller. It needs to not get to zero. 

So that's where we are.  

Lower is x-ray from last Monday.
Upper is today. 😞

Here.

At the hospital.

But still on the floor.

He smiled when talking to Daddy on the phone. He "helped" with his g-tube cares today. He tried to look around various caretakers who were in the way of his TV show. And he's been whaling away at his toys. So he's doing okay.

It's me that's struggling. And that's okay. I can sit with this. I don't have to be happy and positive all the time. 'Cause sometimes this is hard. Sometimes the pressure is intense. And the ironic part is that it's usually when he's not as critical that my feelings are difficult to sit with. Maybe because when he's in crisis there's not time to stop and work through things. That's when I just have to move forward and leave the processing for later. So I'm going to sit with my feelings. Allow them to talk to me. Get to know what I'm dealing with so I can understand. They're not "bad" per se, just hard. And that's part of being human.

Plus I miss my bed. 

  If we will be quiet and ready enough, we shall find compensation in every disappointment.

Henry David Thoreau

Three Guesses, and the First Two Don't Count

When asking the obvious question, my mom used to say, "I'll give you three guesses, and the first two don't count." It was her way of saying, "You know exactly what the answer is."

So here it is: Where's Aaron? I'll give you three guesses and the first two don't count.

Yep, you got it.

We're back.

I kinda expected this would happen, and even pretty much saw it coming. 

I mean, the antibiotics that we've been using forever to keep his tracheitis at bay have been subdued by the enemy. So the plan was to try to get something else, but only use it when he was symptomatic. 

He got something or other about a week ago and we started seeing it in his trach, eyes, and right ear. Yeah, the same place we always see problems start.  But no fever, no nasal discharge, and other than tired, he mostly did okay. 

He did become less stable, but it was for a few minutes here and there each day.  Unstable like, he would drop his sats to the 60's and sometimes 50's.  Not good, but again, it was brief. 

So Monday evening we came back up to get checked out. He looked good, really, but I was on edge with things. In the ED, everything was coming back right in the normal range.  He was even pretty much baseline on his oxygen. There was no way he needed the PICU so he came up to the floor.  We had a new doc on the team who very much didn't want to use the big IV antibiotics. I mean, I get it. They need to not be used except when very much needed.  But when the germs don't respond to anything else (including the one he was sure would work), they're needed! Whatever. 

Yesterday also went really well except I was pretty foggy. We didn't get to our room until just after 5 am. Discussion last night was that we would wait until today for the samples to finish growing and then go home tonight. 

Yeahhhhh. 

Maybe not.

Those grew out just like I was afraid they would. We need those IV antibiotics, and a week of them. Plus, he's become less stable through the course of the day. Instead of mid to high 80's on 3-4 liters, he's struggling to maintain 77 on 8-10 liters. I really don't want to end up in the PICU.  I guess the plus side is, (if he reads the script right) I'll take him home next Tuesday on what's my day off anyway. That will be a lot easier than working all day, driving back up here, and then driving home. Sigh...  

So yep, Aaron is hanging out at Primary's. And frankly, he's having a good time here. I'm grateful for that.

When it is obvious that the goals cannot be reached, 

don't adjust the goals, adjust the action steps.

Confucius

Fall, And Some Hard Times in the Trisomy World

How has it been four weeks since I wrote??

In the meantime, he weathered Covid, finally is getting to school, and overall is doing well.

I won't lie, Covid was rough.

He did okay vitals-wise, but he was miserable, except when he was sleeping (which was a lot).  Even when he was sleeping, it didn't seem restful. This poor kid really wasn't happy. It did earn him a trip to the ER one week in when he started having fevers but everything came back okay (it never comes back great) so we headed back home. 

He is going to school regularly at this point. It only took him about a month to get his act together and get there.  I mean, he went three days and went to the hospital for five days. Home for three days, but not back in school because he was still in pretty rough shape, and then admitted again, this time urgently for another week. Here's where we found out that the antibiotics we've been relying on to keep his colonized bacteria from going all rogue on him have given up and deserted to the enemy. Or at least laid down and surrendered. Or something. Anyway, they don't work anymore. (That makes me just a bit nervous and on edge.)

But he made it to his brother's wedding reception on Labor Day and to school for the next four days, and then Covid. So by the time he was better and going back to school, it was September 19th, four weeks after school started and he had only gone 7 times. I mean, good thing this kid doesn't get written up for excessive absences, right?

But since then he's done well (quick, find some wood to knock on!). Yesterday he went to his niece's 4th birthday party and another family gathering the week before.  After we got home, he hung out with us outside as we worked on putting a fence in. He enjoyed the fall air as we sweated out trying to get holes dug. (It's going to be great once it's done, but like most projects, it's taking waaaaaaaaay longer than I had anticipated. Fingers crossed that it's done before the snow flies.) 

But this week, these past few weeks... Well, they've been rough on our Trisomy community. In a lot of ways, most weeks are hard. I mean, the reality of this life is that our children do not live as long as most other kids, and especially the little ones seem really fragile. But once they reach a certain age (and I don't know what that is), they seem more hardy. Or maybe it's the hardier ones that reach that age? I don't know and I don't have the bandwidth to explore that part. 

Anyway, we've lost some of the older ones, and pretty suddenly. Two girls, 22 and 16 just a couple weeks ago. And this week it was Lane.

Lane was almost 15 years old. Do the math and he's about a year and a half older than Aaron. His parents have advocated for him, and so many others including us, this whole time. He is the reason I know to list phenobarbital (a frequent first line rescue drug for seizures) as an allergy. It's not really, but for a long time we were on another med that the two were contraindicated for.  And I don't mean it would cause a minor issue. Together, the two would cause the heart to stop. Not good. And while Aaron doesn't take that one anymore, he is on a cousin of that heart med, so we still keep it listed as an allergy.  

Lane, and Zane, and Patrick, and Lance, and Nolan, and Caleb, and others are the ones I've looked to over the years for hope, and their moms are inspiration for what I can do. 

And they're all gone. 

It hurts when anyone loses a child. But when those who have been around longer than you, when you're one of the oldest boys now left in the world! it's hard! And it hits right in the solar plexus. It's hard to breathe, to focus, to move forward. He's not even mine. It just feels like it sometimes.  And in the back of my brain, that little voice that I try to silence and shut down, gets just a little louder. "How long until it's my turn?" Because Aaron is getting tired.  It takes longer for him to recover from illness.  He sleeps more.  Please don't misunderstand. He's still goofy and happy and loves school. But it's harder for him. His heart and lungs are getting sicker. 

So I cry, and I pray. (And I worry and I scheme.) I call down the blessings of heaven on Lane's family, and on the rest of us. Because they are so needed.  But aren't they always? For all of us?

“So long as we live they too shall live and love for they are a part of us, as we remember them.” 

~ Gates of Prayer