Wednesday, June 21, 2023

Here We Go!



Somehow the last few days seem to drag on.  Fine tuning and tweaking to try to ensure we don't show up again. 

But it looks good now, mostly, and we do have orders to recheck labs this weekend, just to be positive.

So "soon" we'll have our discharge papers and be on our way! (You know, "soon" in hospital speak means sometime in the next few to several hours.) We get to sleep in our own beds!  

Plus, apparently my poodle is due with puppies next week, so getting home sooner rather than later is good. If you love Cavapoo puppies, we will have some really cute ones looking for homes the end of the summer!  

But, really...


With him.

What a blessing.

"The thrill of coming home has never changed."
Guy Pearce

Sunday, June 18, 2023

Moving On Up, Literally

Yep, he's moving up. To the floor, out of the PICU. 

This is the same kid that ten days ago we were discussing how his heart might stop and what measures would be taken.

He's off his sedatives. They pulled his arterial line; it was used to monitor his blood pressures constantly because for a while, he was that precarious.  He's on his home vent and very much within his normal limits for his oxygen needs.  He's pooping again, and yes, it's that important. When he gets backed up, he hurts, which means he doesn't breathe well, doesn't process oxygen, and frankly, it's miserable.

He had another blood transfusion yesterday. Illness influences the bone marrow and can inhibit the production of red blood cells and we've been watching as his hemoglobin and hematocrit drifted downward over the two weeks since his last transfusion. Hopefully now that he's doing better, they'll stay stable, but that's one of my questions on discharge: how often do we need to be looking at those numbers. 

Did you see that word, "discharge"? Yep, we're talking about it! He's increasing his food tolerance and we're hoping (really hoping) that he makes his goal volume without trouble. We did have to stop for a little while yesterday but when we turned it back on, we started at 25 ml/hr, where we stopped, instead of going back to the beginning at 5 ml/hr. We should hit 60 tomorrow morning, which is the minimum goal.  That would mean we run feeds or fluids through his g-tube over 24 hours with no breaks, but that's okay.  We can slowly work up from there at home. 

If he doesn't tolerate it, we'll have to go home with the TPN and the PICC line. That's okay. It's just another accessory (not that I'm feeling the need for more things). But we can do that at home if needed. Once again, my special needs mamas are rescuing me, sending me videos and tips on how to make things work at home. I've said this multiple times: I could not do this without them. 

Today, down the hall, a butterfly hangs on a door. Today, others will receive gifts of life from a child who won't be going home with their family. 

Last week on Aaron's birthday, a trisomy princess also went Home. I met her parents before she was even born and love them dearly. 

Light and shadow, life and death. Joy and absolute heartache. Love and grief. It's all part of the dance on this planet we call Earth. There is no growth without pain, and while I shy away from suffering, there is so much I've learned. I'm a different person for having walked this journey, I think a better person, and I'm grateful for the lessons. 

Children like Aaron are the teachers of our soul, and I'm so grateful for my mentor.

"The art of living lies less in eliminating our troubles 
than in growing with them."
~ Bernard Baruch

Thursday, June 15, 2023

Stutter Steps

I didn't post much on his birthday because I wanted to focus on him, and not all the mess going on. I was struggling emotionally and needed to "switch the field" or "reframe my story" or whatever expression resonates with you.

But since this is how I detail his journey, and how I keep track of things, now it's time to do so. 

Spoiler alert in case you don't want to read all of it, he's doing better again and we're making decent strides forward. Maybe even bigger than baby steps. Not sure they're milestones, but bigger than inch-stones. Maybe foot-stones? (Yep, just made up a word. English is a living language after all.)

Sooo, Monday was a good day, really, but Monday evening not so much. By then we'd turned off his nor-epi, the nitric and was on home vent settings. They brought a home vent to the room to change him over to it.  And then he started fevering, again. And his sats dropped, his belly got big, and he started looking bad again.  He was getting 20 ml/hr of his feeding but it wasn't moving anywhere, so we had to stop. By 4 am, he was maxed out on the vent again, couldn't maintain sats, was using rescue sedatives, and was put back on the nitric. Sigh...

Tuesday was a big day in addition to his birthday. We spent time trying to figure out what was going on (again!) and working through things. It had been over a week since he'd had nutrition, although his labs were still very reassuring, so he got a PICC line and is getting IV TPN (nutrition through a vein instead of his stomach). He even managed to spend about 30 minutes sitting up in his wheelchair. 

Cute, whimsical door hiding
interventional radiology where 
they put a PICC line in his arm
ending close to his heart.

Maybe that made the difference. Maybe it was tincture of time. Who knows (and not quite sure if I care) but he's doing better again! He's pooping (a lot! TMI?), his belly is soft, and he's breathing better. We're once again weaning his nitric and hoping to be off it by late tonight/early tomorrow. He's tolerating weaning both his versed and his Precedex and we've started his feeds again, reeeaaaaly slowly. He's getting 5m/hr, just enough to try to wake up his gut.  And he spent about 4 hours yesterday in his wheelchair. Being upright, not lying down all the time, is good for a person in many, many ways. 

Next steps are to finish weaning his nitric, wait a while (24+ hours) to make sure he's good with it, and then switch to a home vent. We need to get off all of his sedatives (without major withdrawals) and hopefully increase his feeds. I'd love to go home on feeds and not TPN, but if that's not happening, we'll go home with the PICC and IV feedings. It can happen, it does happen. I'm hoping it doesn't but I'm also not interested in sitting in the hospital if that's all that's keeping us here.

So there's work that still needs to be done, but we've got a plan. 

Let's hope Aaron agrees... 

"Notice the disappointing things and marvelous things at the same time,
because they dance with one another."
Dr. SunWolf

Tuesday, June 13, 2023

Happy Birthday

Happy Birthday, Aaron!

Thirteen years old on the 13th.

Your "Golden Birthday".

It's not the one I hoped for for you, the one I wished for, but you're still this side of theaven, still with us, even though you're not at home.

I wanted to do a birthday party for you on Sunday evening, like the one we had last year, where neighbors and friends came by and wished you well. 

But while that's not what happened, I'm also not in the midst of planning your final party either. Last week I was afraid we would be. I pled with you to hold on. I reminded you that Andrew comes home in a few more weeks. Jonny, Avanlee and Elend will be here soon, too, and we never did get a picture of you and Elend last year. 

So we'll be grateful and glad that you're with us, doing better, bit by bit. We'll get through this and go home.  

Home to our home in Alpine, together. Not to the other Home that I can't go to with you. 

Update:  He's making progress, but it's slow.  Sometimes it feels like one step forward, two steps back. Or fix one thing and another decides it wants attention. Mostly, it's a process of getting him back to where he doesn't need all the extra supports we put on board to get him through all of this. 

Last year I really felt like it might be his last birthday, and it almost was. But we've got today. He's here. He's getting better. We are so grateful. 

"Every birthday is a gift. Every day is a gift."
Aretha Franklin

Saturday, June 10, 2023


We got a smile!

Actually a few!

He's needed very little paralytic, mostly just when we needed to do a CT. That was pretty much a preemptive strike because he's been so precarious and we were needing to move him around and lay him flat. He's not getting his extra sedatives that he's needed, and he's starting to wake up a little.

Now the challenge is to keep him from pulling out all of his lines, rather than keeping his vitals stable. That he seems to be doing pretty well on his own. 

He's been on the big antibiotics now for almost 48 hours, and it's made a huge difference! No more fevers, moving (a little bit) on his own without affecting his ability to maintain his blood pressures and saturations, and a few smiles.

Like I said yesterday, we're still a ways from being able to come home. He's down on his oxygen so we've started weaning his iNO, but that 's going to take time as well.  We also have to wean his blood pressure meds and all the sedatives and get him back on his full feedings.  

But progress...


So grateful. 

¨A smile is a curve that sets everything straight.¨
- Phyllis Diller

Friday, June 9, 2023

Sunshine and Shadow

It's been a couple days...

A couple of very long days.

Scary, dark, hard days.

I'll be honest, some of it is kinda a blur. I think that's my brain's way of protecting itself. 

I mean, I know what's been happening, but there's just a whole lot, and much of it has not been good. Overview from a high level starts with low "soft" blood pressures, high lactate, CO2 being retained and his body's pH slipping. (I guess I detailed that in the last post.)

Anyway, that pattern has kinda continued off and on over the past few days. He's run fevers, hasn't tolerated any feedings, retained fluid and then released it all in a flood with lasix, and then needed more. This kid is incredibly sensitive to lasix so that's been a fun balancing game. 

The fevers especially have been concerning because they fluctuate, but they've been trending higher. He is back on IV antibiotics which seem to have helped, but mostly just blunting things.

We've been discussing some of the bigger guns, but it's hard because we don't have a good target. Last night I suggested that a sniper approach is great if we have a target, but since we don't, and it does appear to be bacterial, maybe we needed the carpet bomb approach. 

I'm not thrilled about using the really big IV antibiotics, but this kid just doesn't currently have any reserves.  I mean, shifting him in bed means he drops his blood pressures and sats. If an infection gets a good hold on him, we're sunk. Literally. We actually had the conversation the other night about how long they would code him if his heart stopped. That's a conversation that no parent should ever have, and yet, we did. I didn't sleep much at all that night. And I didn't leave his room much for anything. He was that tenuous. 

On the left, the banks of IV pumps. On the right,
the hospital vent and his iNO. This kid has all 
sorts of accessories. Under the light in the back
is the chair I "sleep" in.

But today, he's been on both antibiotics now for almost 24 hours, and we are seeing some movement. Paralytics were used 6 times on Wednesday, 2-3 times yesterday, and maybe once today. We're weaning a little on his sedatives, although he's still pretty deep. Blood pressure meds are a little lower, and we've been able to wean his oxygen down to 75%. Also, no fever yet today.

However, he has a loooong way to go still. He's only getting 5ml/hour of his feeding. That totals to 120 ml/24 hours. Normal is almost 1000/24 hours plus 450 of pedialyte. He's getting his pulmonary hypertensive meds every 2 hours instead of every 6.  He's got 7 IV lines running. Fortunately, several can go in together, so he's got 3 IV's in. Like I said, among other things, a long ways. 

But today, I finally took a little time for me. We're in a back room in the PICU with no windows. I have no idea if it's sunny or rainy or what most of the time. Today I got a salad from the cafeteria and ate it on the patio on the 4th floor. 


Food for my soul.


This is not easy, in fact, it's really hard. But through great support here and at home,  through prayers and love, we're doing hard things. We have before. We will again. The "hard things" may change, will change, but still, we move forward. 

Self-care and processing is a big part of being able to do that. 

Sunshine is my self-care, blogging is how I process. Prayer sustains me through it all.

"Life is a mixture of light and shadow, calm and storm, and it's all good." 
~ Susan W. Krebs

Tuesday, June 6, 2023

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. 

Monday, June 5, 2023

Blood for the Win?



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 

Sunday, June 4, 2023

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

Friday, June 2, 2023


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."

Thursday, June 1, 2023

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.


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