Itty Bitty Baby Steps...

I don't know if I have the bandwidth to dress this up, or explain various medical things. If you're wanting the down and dirty, the TLDR: he's doing better than this morning, still a long ways to go, but better than before. 

If you want the nitty gritty, I'll try to detail it but you've been warned. I'm reminded of when I first started this journey and I would need two dictionaries to try to decipher what things meant: a medical dictionary for the terms and a regular dictionary for the terms used in the medical dictionary for whatever it was I was trying to understand. I don't think it will be that detailed, but at this point, I don't have it within me to try to put it in non-medical, at least I don't think I do.

This morning, Aaron's blood pressures were very "soft," they were low, really too low. In response, his heart was having a hard time pumping it, especially to his extremities. His lactate (yeah, measures lactic acid, the same thing that makes the muscles sore when you exercise) was building, indicating that there wasn't a good gas exchange in the cells. He was retaining CO2, which also made his body more acidic and his pH started slipping. Our bodies really like a narrow window: 7.33-7.39 from the veins. He was 7.26. Cell death begins about 6.9-ish.  Like I said, a narrow window. 

He was also fevering, his belly was huge again, and he was on 100% FiO2 through the vent and maxed out on his iNO. Even with all this, just moving him caused him to drop his sats and his blood pressures significantly. Diaper changes, shifting in bed, all those became dangerous even though he was already on versed for sedation, which helped, but didn't completely snow him. 

Fortunately, he did have an IV that we could draw from so we didn't have to add the stress of being poked. The good news? His heart numbers actually came back better than we've seen for a few years. They're still high, but not as high as they have been and nowhere near as high as I was afraid of. The further showed that it's the storming that's driving the bus. If we can get the rest under control, his PH should fall in line. 

We managed to get an arterial line in his right wrist to monitor his blood pressures better and put him on norepipenepherine (norepi) to stabilize them. He's on Precedex for deeper sedation, and lasix because he's now retaining fluids. 

As of 2 pm, his lactate was smack in the middle of normal, his pH was much closer to normal, and his CO2 was decreasing towards his normal range. His blood pressures were better and his heart rate and respiratory rate were close to typical for him. He's doing better.

Because he's resting, he's now much more stable. So much more that we've already been able to decrease his norepi and precedex a bit and reduce his Fi02 to 80%. We still have several pretty intense rescue meds at bedside in case things go bad again, but I'm hopeful they won't. 

They'll pull labs again this evening, and we'll hope the numbers are even better. We are making baby steps, itty bitty tiny baby steps, but the seem to be moving in the right direction. 

The staff here have been incredible, trying to see all the options and I'm very much part of the discussion and the team. But I also have to credit the many prayers and good thoughts and vibes that have been sent from both near and far. This morning as things were so critical, I asked for prayers and they came pouring in. I was given strength and clarity that are beyond my ability, along with a sense of calm. What should have taken me to my knees (and did in prayer) did not. I was able to focus and be part of the solution, holding his hand and brushing back his hair, speaking to him as they worked to put in his line. 

Thank you to everyone who holds us close and calls down heaven's blessings for Aaron and for us.

"You don't have to see the whole staircase, just take the first step."

Martin Luther King, Jr. 

Blood for the Win?

Maybe? 

Hopefully?

Not sure yet, but it's early.

Not quite as early as they woke me, though.

Last night was rough. We switched ventilators, and didn't see much improvement. We added iNO (inhaled Nitric Oxide) and didn't see much improvement. Plus he would have desats that were pretty significant. 

He currently has two pulse ox probes on, one on his hand and one on his foot. When we widened his PDA last summer, that made it so he had more of a pop-off valve when his pressures were high, but it also means that his upper extremities have a higher oxygen saturation than his lower extremities. The difference between the two tells us how bad his pulmonary hypertension is, or if might be his lungs (asthma, pneumonia, a cold) that's causing issues instead. 

Well, last night his pre-ductal probe was dropping into the 70's, and his post-ductal into the low 50's. Over and over again. For reference, when he's well, we only do post-ductal and he's usually in the mid to high 80's. I mean, can you see keeping a pulse ox probe on this kid's hand? Yeah, me neither. 

We did finally get him to settle down with the plan that if it continued, they'd draw another CBC and see where his hemoglobin and hematocrit was. It was okay but not fabulous when we were admitted, and cardio kids, especially PH kids, tend to do better with higher crits and hemoglobins. 

Apparently that happened because at 4:30 am, the resident woke me wanting consent for a transfusion. He wasn't dangerously low like in February 2022, but it was low enough and we were also out of other options. 

So yeah, he got some good red stuff, and now he's looking better. He is sad for some reason, and this kid almost never cries. But his oxygen both pre- and post-ductal are much, much better. They're better enough that we're going to try to start weaning him down from 100% FiO2. He needs to get to about 50% before we start weaning his iNO. Once that's off, we can try his home vent. 

It's a process, but I'm hoping it will be (relatively) straightforward.

Now the question will be, why is he needing blood every few months?? 

Is he becoming a vampire?

"We are linked by blood, and blood is memory without language." 

~ Joyce Carol Oates 

Still Searching...

Fevers are back.

High oxygen needs are back.

He's been awake off and on today, so that's good, or at least okay. 

But we don't know what's driving this!

We've increased his Ventavis (inhaled iloprost - a pulmonary hypertensive med) from every six hours at home, to every four hours and now every three.  We tried to reduce his rescue Clonidine for the neurostorming and his temp shot up, so that's on board again. We've now stopped his feedings again. 

Nothing is coming back positive, and his bloodwork looks okay, too.

And yet, he was just switched from his home vent on high O2 and sick settings to the hospital Servo (you know, the ventilator that has a brain).  And we're doing inhaled Nitric Oxide (iNO).

I just don't know...  

He's not in pain.

He's being cared for.

I was able to go to church and take the sacrament today.

In testimony meeting, one sweet mom spoke of being here now for three months with her daughter who's fighting cancer.  She spent significant time in the PICU and then moved to the cancer floor.  On the day she was supposed to go home, she returned to the PICU instead.  And she spoke of being so tired, of being unable to go on. Her family is split up between the hospital, home and three on missions. I've been there, I've felt that.  

But then she pointed out that our Savior also reached the point where He felt He couldn't go on and pled for relief, if possible.  But if not, then He would finish.  And He did.  And because He did, we will also go on. Our sins can be forgiven. We can live again. We will have our precious children, our family, back together.  

And while I'm not as tired as she is, I am tired. No answers is hard. No good plan for recovery is hard. But I am reminded that there is One who has been here before, that He is always with me, and with Aaron. He does know the answers and the Plan and what will happen. I need to remember, to trust, to be still and let Him guide. 

Because He really is the only one who can. 

All the art of living lies in a fine mingling of letting go and holding on.

Havelock Ellis

Awake!

He woke up! 

Yes, it's that big a deal.

He's been tired since last weekend, and mostly asleep since Tuesday night. 

We would see eyeballs occasionally, but not for long, and pretty much not at all since we got here.

He's also been fevering and nothing we did changed that.  It was 38.5 most of the time, sometimes fluctuating between 38.3 and 38.7 (100.9 and 101.7).  Tylenol, Motrin, rescue storming meds. Nothing touched it. 

It's 37.5 (99.5). 

The V EEG is going and he didn't show anything for the first 24 hours or so. Pretty sure we've seen two seizures in the last few hours. While I wish he wasn't having them, I'm grateful he's "performing" while the test is going. It will run for two more days, unless there ends up being plenty of data before then.  Sigh...

But awake, yeah.

I don't have to tell you what it does to a mama's heart to watch her child lie sleeping, hour after hour, day after day.  And it's really only been a few days. But somehow, it seems to stretch and feel like much longer. 

Here's hoping for steady improvement and moving forward.  

He is asleep again, but seizures are exhausting.  That's okay. Baby steps... 

"The hardest part of being a parent is watching a child go through something really tough and not being able to fix it for them."

Unknown

His Birthday is Coming, But He's Struggling

A little less than two weeks from his birthday, and we're back in the hospital again.

In the PICU.

By ambulance.

With lights and sirens.

Yeah... 

May is over, school is over. He had his dance festival. I LOVE these! If you want to see authenticity, watch the kids in his school. There's no pretension, no hiding feelings. These kids can move! And they have so much joy to share.  

Then it was project time for me, trying to get some things done before he actually got out of school. You know, in between medical appointments and stuff like that.

We had an old swing set that blew over and needed replacing. I also have a small picnic table my dad built several years ago that's seen a bit too much love. So I set to work painting a new swing set (that isn't quite set up yet) and refinishing the picnic table.  I think it turned out well, and Aaron enjoyed the last few days of school.

But meantime, he seemed to have picked up some kind of bug. What kind? Who knows! We handled it at home this time.  

Or so it seemed.  

Seizures are still a "thing" and we've increased his Keppra to help battle them. They're a less vicious, but still, they're happening, at least a few times a day. His special needs ped wants to try to (very slowly) reduce his neurostorming med, Clonidine, so we started that on Sunday. For the next two weeks the plan is (was) to reduce from 400 mcg to 350 mcg/day. And then of course, we were just getting over his cold. 

So what happened? Who knows exactly. Probably a combination of all of the above. 

But on Sunday he struggled more with his oxygen, and this was before any med changes.  By Sunday evening he was running a low-grade fever.  Monday and Tuesday were kinda a swing-ish days.  Oxygen was high and then low, and then high again. Temperature was normal, not normal, and normal.  He seemed okay. 

On Monday we did a virtual appointment with neurology where the PA and I decided we wanted to get a 72-hour VEEG (EEG with video feed) to determine if what we're seeing really are seizures or something else before increasing meds again.  

All in all, pretty routine stuff.

Wednesday afternoon . . . not so much.  

He struggled, really struggled.  Michael needed a ride to a high adventure drop-off, just a mile or so away and at 4, I wasn't sure if I could take him or he needed to call for a ride. Aaron was super high on his oxygen and not wanting to keep his sats up. I had already increased his pulmonary hypertension inhaled med to sick settings and given a lot of albuterol. He pulled his act together and I ran Michael over.

About 9:30-ish, he started alarming again. William asked if I needed take him in and as I got up, I said, "no, I don't think so, maybe just down to American Fork to get an x-ray if anything, just to make sure." Then I rounded the corner and his sats were at 51. 51%!!  Yeah, that got my attention.  

Grabbed the bag, grabbed more meds even though he'd had them not long before. Dumped more respiratory meds in while bagging him and getting him stable-ish.  He was working sooo hard to breathe! I yanked his onesie off so we could see it better. Lungs didn't sound that bad, but still... Obviously we had more than we could take care of at home.

Once again I found myself calling 911. By the time they got there, he was into the low 80's (which is fine for him) but only if I was actively squeezing the bag. 

Normally (okay, normally when needing to be bagged) we can bag him up and then just leave him on the bag and he breathes well enough on his own. Not this time. If I even paused, he dropped. Even after getting him higher, on the short trip out the door (where it was too tight to be right next to the gurney) he dropped back into the 50's. 

No bueno.

So we came fast, lights and sirens and the whole shebang. 

On a fun note, there's an ER doc that I've served with on a council for several years, and he was on when we got here. Even funnier, although we've worked together for quite some time, I think this is the first time he's actually taken care of Aaron, although he's known about him! 

X-rays looked good once we got here.  Labs were actually okay, too. But still, we've got the fevers and the significant needs that brought us in. He's come down on his oxygen but the fevers are stubborn and not moving much at all.  He's slept almost all day (which might be influenced by the fact that we didn't get to bed until about 4:30 or 5).

Since the plan was to try to get a VEEG anyway, they've got that going, too. He's trussed up like a Thanksgiving Day Turkey. 

The thought is that the seizures may be an side note to what's going on but probably not influencing things much. 

More likely, it's a combination of the pulmonary hypertension and neurostorming, and it will be up to Aaron to determine when he's done with those. In hind sight, I should have recognized earlier that it might be the weaning process that was setting things up. I should have been more aware and tried to work with the fevers before they increased. 

In class, we were encouraged to help clients not "should" on themselves. But in practice, with myself, it's a lot harder. I keep thinking, "I should have this, I should have that" and it's hard to let go of that. In some ways, it helps to prevent future mistakes, but somehow I need to let go of what I did (or didn't) do. 

I encourage others to give themselves grace, to allow that they did what they could with the knowledge they had. When we know better, we then do better, but we can only accomplish what we are capable of at the time. 

It's easier to do that with others than with myself. They tell us that to be effective therapists, we have to be willing to do our own work. Sometimes (often) I've got a lot of that to do. It's hard to leave those "shoulds" in the past where they belong and just take the new understanding to the future. 

But he will be 13 on the 13th. His golden birthday. 

For the boy who lived. 

"...may you live all the days of your life." 

~Jonathan Swift

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

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.