The Plague, Sigh...

This kid can NOT catch a break! 

Was out of the hospital for almost 9 weeks, went to three days of school and back in due to his "cranky brain."

Was home for 4 days and back for another week with a bad tracheitis (that I almost didn't recognize in time). 

Home for a week, made it to his brother's wedding reception, went to school. 

Happy, smiling, playing, laughing!!

Until Sunday. 

Sunday he was super tired, and a bit junky. Like he really slept most of the day. He also had a few of his cranky brain spells. (I really don't know what exactly to call them. They're not seizures and "neurological irritability" seems kinda long.) A couple people we know mentioned they had just tested positive for Covid, so it was on my mind.

Um, yeah...

Now it's very much on my mind. 

I debated about testing him. I mean, other than super tired and a bit of junk (really not that much), the only other reason to was that I've been hearing about it being on the rise again and he goes to school with a lot of other compromised kiddos. I did NOT want to put them at risk.

Fortunately, we caught it at the very, very beginning. His nasal swab was negative, but with a trach, you can get a better, more sensitive sample through there.  I mean, the trach stoma is much closer to the lungs (where it lodges) than the nose. That one had a faint but definite line...

What a blessing to have a friend who is also a doctor, who also knows Aaron really well. I wrote a text and she called about the time I pressed "send." I was trying to be rational, but I really don't know what I would have done without her. When you spend 3 1/2 years trying to avoid something...  When you spend 13 years keeping an "incompatible with life" kid alive... When you've already had "the talk" a few times over the past year alone... Well....  It's his life, our life, but I love it and I'm not ready for it to change. 

We spent the next half hour on the phone going over any possible med interactions and trying to find a 24 hour pharmacy. 'Cause you know it happened later on a Sunday night, of course.  

So now he's on antivirals and we've got an extremely low tolerance for any decline. The good news is that other than still being tired and having a cranky brain, he's doing really well.  Sats are high, heart rate and oxygen needs are somewhere between super awesome and normal for him. The rest of us are currently testing negative and we're taking all the precautions we can. 

I'm hoping and praying that he sails through this and is back in school next week and the rest of us don't get it. William is swamped at work, Michael is in the middle of football season, and I just started a new job. I'm loving it, it's amazing, but it's also overwhelming and not such a great beginning if I have to take a week off after only a few days. 

But mostly, I really need him to kick this. We have been the recipient of so many, many miracles over the years. But as always, I'm greedy. I want more. We need our bug. 

"Miracles are not contrary to nature, 

but only contrary to what we know about nature."

- Saint Augustine

Home!

We're home!

He's happy!

YAY!!

There will be some adjustments and need to watch things differently because he can no longer use the antibiotic that's worked to keep him out of the hospital for probably the past eight or ten years. 

But he's here, healthy, and playing fun games.

Tonight is Matthew and Kensey's reception, and we're celebrating life with them. 

“The best journey takes you home.”

Author unknown

Quick Update

Quick update because I. Am. Wiped. Out!

However, Aaron is doing really well! He's up to his old tricks of thinking the pulse/ox light is a toy and trying to pull his blood pressure cuff off with his teeth. We've hung toys which do seem to distract him a bit. Awesome that he's needing the distraction!!

It looks like our hero has a trach infection: tracheitis. We're hoping to narrow the antibiotics sometime today to something a little less like a bazooka and more like a sniper's rifle but have to wait for the bugs to finish growing and figure out what kills them. 

Yesterday I left to move Andrew into school and Matthew and Kensey get married this weekend.  It is incredibly unlikely (read "not gonna happen") that Aaron will be home before Saturday. But there's a decent chance that he'll make it home Sunday or Monday and go to the reception. 

And I start work on Wednesday. 

Life is racing along a breakneck speed.  And that can be a good thing.

“The best of times is now.” 

—Oprah

Hope

Aaron's back in the hospital.  For those who need the Reader's Digest Condensed version, or if you have PTSD from medical trauma!!! here's the TLDR: Aaron struggled more Sunday and into the night. Monday was really rough and we brought him back up to Primary's.  

He's now in the PICU and looking much more stable and we have a plan. Looks like tracheitis, at least preliminarily, and he's already responding to antibiotics.  He's also given lots of smiles, hand holding and pulled his EEG leads off this morning.  So that's where things are in a nutshell.  

If you need to stop reading now, please do.  I will keep writing for my own benefit.  You're welcome to join my therapy session or not. It's all good. (This is also likely to be long.)

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

We don't come home from the hospital "all better." We come home when we can do the things at home the hospital is doing.  I knew it would be more intense with his new med and increased frequency of treatments, but it was also totally doable.  

He started running fevers and I thought it might have been a reaction to his transfusion. They were intermittent and not that high at first, but they also didn't go away like they should have after a few days. 

He stopped tolerating his vest and needed to be bagged Saturday morning. Not completely out of his norm but still...   He was still having a few "spells" a day, but not nearly as many or as intense, dropping sats but not as low. We even made it to the neighborhood picnic Saturday night, although I left a little early because he was starting to struggle more.

Saturday night and into Sunday went well. Due to an oversight, his critical heart med was missed Sunday morning. This is the one that normally he gets four times a day but we'd increased to six times a day temporarily. By the time I discovered the error, it had been seven hours since his last dose instead of four. He got albuterol during Sacrament meeting and then I had to take him out of Relief Society because even turning up his oxygen he didn't do well. Ended up pulling his brother out of class to bag him while we went home a little early so he could get the med that had been missed, hoping it would fix everything. 

It didn't "fix" it, but he did improve. At least he was able to go back on the vent and not be bagged. He was fevering again, so I gave meds for that, albuterol just to try to open him up more, and then even his seizure rescue med because it has sedating properties and I was hoping that if he would relax more, he'd breathe better. We were doing his meds as frequently as possible, but I also began to suspect that maybe this was an infection or illness because he would respond to his Tylenol and Motrin. If his fevers are driven by neurological irritability (or as Deborah put it: "Cranky Brain"), those won't touch them. He needs other rescue meds instead. But I wasn't positive because frankly, I was giving him everything I could, including those rescue meds, trying to keep him stable.

He actually did "okay" through the night Sunday night but I had already decided that he wasn't going to school like we planned on Monday. His nurse showed up on Monday and I planned to run errands and take care of a few things. She was going to take him out on a walk. We both thought that if we could get him up and moving, things might improve.  But he struggled more so that got scrapped. He bounced back and forth from 10 to 15 liters of oxygen just to maintain, sometimes needing to be bagged. More Tylenol and Motrin. Put two pulse/ox probes on so we could monitor his pulmonary hypertension, which was actually pretty okay. 

His tummy got big and at 11:30 when H pulled back to make sure he didn't have a bunch of air, we got vitamins and senna that had been given at 7 am, so nothing was moving. We stopped feeds and got ready to go. Right up until we left, I wondered if an ambulance would be better.  Frankly, as we headed out, his pulse/ox wasn't reading great and I considered turning at the fire station, but ultimately we just came up with H bagging him all the way.

We got here and he was a mess, putting it mildly. I know the nurse at triage was following protocol when she asked us to check in with registration, but there really wasn't time. I asked if we could just do that in the back because he was in trouble. In her defense, I have showed up here with him on a bag and otherwise stable. But not this time.

I pointed out (and used the word "mess") that he was being bagged on six liters of oxygen and struggling to maintain sats when he was usually on 2-4 liters on a vent and we were in trouble. She immediately brought us back to a large room while calling for an "urgent response, code red patient".  The room was full and busy. Code status was verified (he's still a full code and there was the real chance that he would code). A hospital vent was brought in and he was put on it while two teams put in two IV's, labs were drawn, x-rays ordered, antibiotics and fluids started (all the sepsis protocols) and he mostly just took it. There were some tears, but no fighting. He required 100% oxygen to just approach his goal of 77%.  We had NO wiggle room.

Preliminary results really didn't point to anything in particular, and he was transferred to the PICU.  Up here he became almost completely non-responsive. He struggled again with his sats and required more bagging with the ICU bag, but this time he started coughing up some nasty stuff and then was more stable. CT scan of the brain was ordered to make sure he didn't have anything going on in there that would need intervention. It was negative, thank goodness. An 24-48 hour EEG was started to make sure he wasn't having subclinical seizures.  He actually was a little interactive as they put the leads on, not a lot but better than before.  And we were able to wean his oxygen a bit.  

He actually slept okay overnight.

This morning has brought a much different child. He has decided that the EEG is not necessary and started removing it. The doctor thought it was funny, agreed with him, and sent orders to remove it. Physical therapy and occupational therapy have been in for an assessment and he smiled and played with them. He held hands with the respiratory therapist. We've pulled more "junk" from his lungs (even though the x-ray looked pretty much just like it always does). 

And his trach aspirate (stuff we suctioned out on admission to check for infection) is growing a large amount of white blood cells.  Tracheitis for the win.  They're also checking again that nasty right ear, because yes, it is still nasty.  You know, MRSA took up residence in there quite a while ago and doesn't seem to be paying attention to any of the eviction notices. 

Twelve hours into antibiotics and he's doing much better.  He's also getting blood. Again. Because of course... 

So there we are, or here we are. But yeah, much more stable, interactive and happy than he was yesterday.  Much more hopeful. 

While there is life, there's hope... 

~John Gay

Heading Home!

Can you believe it? 

Not sure I can! 

Yesterday was rough enough that I wasn't quite sure where things were going.  But with his new med and his increased heart med, he's had a good 24 hours.

Oh, we've had to rescue him a few times with oxygen but it was doable. And now we're not doing anything that we can't do at home.

So home it is! 

He's finishing up his respiratory treatment because you know we want him in tip top shape for the drive home, and then we're outa here! 

So very grateful... 

“No matter who you are or where you are, instinct tells you to go home.” 

— Laura Marney

Update on Aaron

Faithful pal Scout wears
Aaron's socks so they
don't get lost.

I know, lovely title.  But hey, it tells you what it is, right? So update...

He's not seizing, but his brain patterns are very disorganized. (My own brain feels disorganized...) His neurostorming, or neuro irritability have increased, and that's what we're dealing with (we think).  They actually look a lot like a pain response which is of course not fun, but he also drops his sats, often into the lower 60's.  Not cool.  But hey, at least they're not seizures!

We added on another med to help "cool the brain" and it seems to be helping. He got blood because some of his iron markers were low. And then there's his pulmonary hypertension. Yeah.... It's bad, worse than normal. We were struggling to keep his sats up so I moved the probe to his hand.  We had a 20 point spread.  Normal for him is 5-10.  (For the rest of us there shouldn't be any spread.)  So with that, we conferenced with the hospitalist and med student, the cardiologist and his fellow, the nurse, charge nurse, RT, and got his cardiologist on the phone. It was a party!  The hospitalist had already spoken to the PICU a couple times but they weren't part of the group. The consensus was that we would increase his inhaled cardio med from every 6 to every 4 hours and see if he could maintain his goal saturations. I wasn't sure he could, but was still trying to avoid the PICU. If he dropped at any time, or if anyone in the group was uncomfortable, we would move into the PICU where more supports could be added. 

I have to admit, I was hoping but not hopeful that we could avoid the transfer. 

Once again, he seems to have done it. He made it the four hours between treatments, and then five hours (because RT was pulled into another situation)! He did well overnight.  He started struggling a little bit this morning but quickly recovered, and rescuing a time or two at home is easy.  So maybe there's a light at the end of the tunnel and it's not an oncoming train! I mean, really, everything we're doing now are things we can do at home.  So fingers crossed...

We have looked at pretty much everything here. They even brought in wound care and general surgery to discuss his g-tube.  Some stomach tissue is growing up and out of the stoma and when that's an issue, the remedy is to close off the stoma and create a new one. There was also a little concern that perhaps his nissen had come undone so an upper GI series was ordered. Those usually only last a few years and it's been almost 13. Redoing a nissen is a difficult surgery for anyone. There's scar tissue and the need to undo and redo. It's rough. Take a kid who doesn't play well with anesthesia and it becomes exponentially more risky.  

I watched the surgeon's eyes widen and his face blanch when I told him what Aaron's pressures are. See, our systemic blood pressures (the force the heart exerts to push the blood around the body, what most people think of) are supposed to be about 3x the pulmonary pressures (the amount of force needed to push blood from the heart to lungs).  Instead, Aaron's are reversed. His pulmonary pressures are about 3x his systemic ones. That's BAD. Really bad. The good news is that we ultimately decided that his g-tube is working well with minimal issues and the nissen is there so no surgery needed.  Whew...

So that's where he is, where we are. He is getting more tired. Hospitalizations seem to be more often. But in between, he's loving his life, growing, playing, laughing. So we are still doing "for" him, not "to" him. He has many more good days than bad ones. His life is still good.

 "Not how long, but how well you have lived is the main thing.” 

— Seneca

Back to School, Back to Primary's

First Day of 8th Grade

Actually those two don't necessarily correlate, but they both happened this week anyway. 

Like I said a couple posts ago, it's been a busy summer. Andrew came home, Joseph got married, puppies are growing, school and football started, and Aaron stayed home unless it was for fun things.

Lone Peak Maroon & Gold Game

Until yesterday.

Last April we struggled with seizure-like activity that calmed with increased meds. June was not fun, and then we did okay.

He did continue to have "spells" but they were relatively benign, very little if any impact on his vitals. But still, they occurred. And then more often, and more often, and started to impact his breathing, or at least his oxygenation.

Puppies!

The past week or two they've really picked up. He went from one or two a week to one most days. And from there to a few each day. And they started affecting his sats again. By Friday he had at least two significant spells that dropped him down into the low 60's. During the night there were a few more and then Saturday morning were even more.

So I gave up.  

Visiting with Gramma & Grampa

I mean, I had things to do, plans made, but they went out the window. 

The good news is that I got him here myself instead of calling for help.  

Nephew Elend thinks Aaron's tubes are fun!

We're not quite sure what's going on. I know his pulmonary pressures were up significantly because when I put a probe on his right hand and his left foot we had an 18 point gap in his sat rates, so he got an emergency dose of heart meds. 

He is "performing" up here. He had one in front of cardiology, one as we were transitioning to the neurotrauma floor (neuro for him trauma for me, just kidding, mostly).   Three more before midnight and then two more just before shift change.  So now we try to plan. Cardiology and neurology are being looped in.  Good news is that most of his labs and x-rays look really good, but that also means we're not sure where exactly to look, why this is happening. 

Fun times before Jonny, Avanlee & Elend 
go back to Saudi Arabia

So there we are. 

Stylin' for Joseph's Wedding

It looks like his heart is struggling as well as his brain (seizures). Why those two go together in this situation, I'm not quite sure. Is the brain driving the heart? Or is the heart pushing the brain?

We got eight really good weeks at home and we're back.  I AM grateful for the help we receive here. I just wish my boy didn't struggle so much.  Sometimes I really hurt for my little hero.

A hero is an ordinary individual who finds the strength to persevere and endure in spite of overwhelming obstacles. 

-Christopher Reeve