Tuesday, May 9, 2023

Fun With Trachs, or All's Well That Ends Well

Once again, if you have medical trauma, please don't read this.  He's fine, I'm fine, we're all fine (and not in a Star Wars "it's all fine" kind of way).  This is your warning.

Aaron's been doing fairly well.  

Other than some really nasty seizures.  I know.  Those aren't okay. Not at all.  But we're working on them, increasing meds, seeing doctors tomorrow.  And they're decreasing, so there's that.

I'm done with school (which seems so weird!)  and trying to move on to all the projects that have been so neglected: a fence, replacing a playset, cleaning the house (yuck) and so on.  All the things that have been pushed to the side for the past two years.  Lots of medical things, too.  Aaron's various appointments, following up on my own health, Michael's wisdom teeth.  You know, life kinda things, right?  

But through a series of errors, starting with me and then continuing with someone else, Aaron ended up without any humidification through the night.  The last time something like that happened was years ago, and also had an almost catastrophic event.    That time we had just arrived at the hospital for an appointment.  This time he was home, but just barely.  

So today, Aaron and Holli arrived home while Michael and I were fixing sprinklers (so much fun).  He was doing okay, but not awesome. She mentioned that he had been a bit more cyanotic, especially in his legs, which might suggest higher pulmonary hypertension.  Or apparently, maybe something else.  I had warned her that with the lack of humidity for several hours, he might be more prone to plugging and to watch for that.  As she got him back in bed, he started coughing.  And coughing.  And coughing some more, without much production.  I was still outside, so she grabbed the emergency trach and did a change.  The trach was kinda nasty on the outside, but nothing inside.  

At that point, I was back in the house and she called for me.  Went in and we tried suctioning, turned up the O2.  Of course, he also had a huge BM that was kinda everywhere too, 'cause why not?  He's really struggling to get air in, and is turning some nasty colors, so I went further, and when I tried to flush the ballard, it was as if there was a a blockage, even though i could feel suction coming through. Looked closer and a HUGE thick plug was stuck in the trach, and not able to pass.  The trach. Not the ballard.  You know, his airway

Last year when he was in the ER for blood clots, the ENT gave us large suction ballards in case we ended up with clots too big for his standard one.  You know, like this!  (For the record, he uses a 10F.  These are 14F.  Much larger.)  Fortunately, I knew exactly where I'd stashed them.  Holli grabbed the ballard that was attached to the trach and removed it while I snatched the 14F and attached it to the suction machine.  Michael was there as an extra set of hands and cranked the O2 all the way up.  

We got him suctioned, taken care of, and you know he started laughing at us.  

This kid...  Sigh...

Now? He's sleeping.  His heart rate is still higher than I'd like it to be, but his sats are good.  And I'm grateful for an all-hands-on-deck group that can just work together, and the knowledge we all have.  But I would still be okay with not repeating this experience.  

His birthday is five weeks from today.  13 years old.  13 on the 13th, his golden birthday.  A birthday that honestly, a year ago I didn't think he'd see.  He was still struggling so much from being septic in February.  I'm starting to let myself believe he'll be here, mostly.  Honestly, I guess most of the time I actually don't think about it.  It just "is".  Does that make sense?  But sometimes, days like today, it hits me pretty hard how precarious his life truly is.

On Sunday, I was privileged to help with a memorial service that Primary's does each year for families that have lost a child in the previous year.  It is beautiful, touching, and heartbreaking all at once.  Friends were there. We honored their children.  We hugged and wept.  I teared up as one mom came into the portrait room and fell to her knees sobbing as she reached for her child's picture on the divider.  I honor her.  I honor all of them.  I try to hold space.  There is nothing that can "fix" this, but I can be there, remember, and bear witness that their child lived, loved, and was and is loved.   Just like Aaron.  

For now, we keep moving forward. Like I said, he's okay.  I'm okay.  We keep moving forward. Because frankly, there is no other option.  

"Where there is love, there is life."
Mahatma Gandhi

Wednesday, May 3, 2023

Graduation Day!

I did it.

WE did it.

Graduation day is today!

I have to admit, I have mixed feelings.  I am REALLY going to miss my cohort, miss Fridays and all the discussions.  I'm not going to miss discussion boards, necessary evil that they are. 

This past week has been more relaxing, more puttering around than I remember doing for a looooong time.  I might even actually clean my house again.  

Aaron is doing well, actually went to the class with me a couple weeks ago.  His seizures have cropped up again, much uglier and nastier than we've ever seen.  They last longer and are now affecting his vitals, so we've increased his seizure meds and that seems to be helping, although not eliminating them.  So there is that.  

I took Linnaea on a train ride last week (Frontrunner) down to UVU. She had a blast! That girl is so cute! We've also spent time playing and weeding (me weeding, her picking flowers for Mommy) the yard.  It's fun to do the Gramma-type things and not be quite so busy.  

Nursing continues to be a challenge, especially night nursing, but we've figured out a system so I still sleep even with no nurse.  Aaron does too (usually).  

The sun is shining, summer is coming (here?) and life is looking pretty good.  I've got a job offer that I'm seriously considering and a few more interviews in the offing, but I won't start working until fall.  You know, having a missionary come home, two weddings and a kiddo's last summer before his senior year kinda makes for a busy time!  

So that's where things are.  As for my brain?  Well, I'm still trying to process things, figure them out.  That may be a post for another time.  (You've been warned.)  

But I'm so grateful, beyond what I can say, for the growth and opportunities I've had the past two years. The support I've received from family and friends, and my cohort, has been AMAZING! From people helping me figure out new concepts to nurses stepping up to help with Aaron, to my family who has picked up a LOT of the slack and probably felt abandoned as I lock myself in my office to get homework done, to the people who just believed in me, especially when I didn't believe in myself.  This is a team effort.  

One of the things I love about the social work concepts is that a person is not alone. They have to be considered in their environment and how that social system impacts everything around and about them.  And each person's journey is theirs, not someone else's.  I have been so blessed with an amazing cheer section! That expectation and belief that I was (am) capable!  

We did it!

I did it!

And today is going to be amazing! 

“You and you alone are the only people who can live the life that writes the story 
that you were meant to tell.” 
– Kerry Washington.