Be Gentle, Pushing Too Hard Is Rough

So we're home. (How did I not put that up?) He came home two weeks ago today. 

Then we had Thanksgiving week. And the day after where we put up Christmas. 

So essentially I had six weeks of illness and/or hospital stays. The first one was 13 days and we were on the floor the whole time. The second was only 25 hours later, admit by ambulance, land in the PICU where the doctor recommends I don't leave the hospital for a few days as we watch how things play out. Yeah, he was that sick. 

After about five days, we thought we were on the right track and started talking about being on the floor for another week-plus, or going home with a PICC line. We opted for the floor initially to make sure he was stable. Good choice by the way. We went to the floor on Sunday . . . and back to the PICU on Wednesday where things got rough again. It took 11 more days before he was stable enough to come home.

During this time, I also kept working (except those two really hard days). And we had state football playoffs. And while on the floor, I slept on a somewhat uncomfortable couch, but in the PICU it was a "reclining chair bed." Those quotation marks are important. It was a stretch to call it a bed, yet that's where I slept, because I already felt bad about being away during the day. Needless to say, there wasn't any great, restorative sleep during that whole time. 

We came home and it was Thanksgiving time/Christmas decorating time, and while I didn't do as much as most years, it was still important to me to do it. And I think important to the family. Too many things have been put on hold over time. 

So then what happened?

Yeah, my body and mind decided to assert itself and say ENOUGH!!

I hardly was able to get out of bed last Saturday, and Sunday was also rough. Migraines, stomach issues, just all over body aches and serious brain fog. But Sunday I got to go to church. I think I've only been in my home meetings a handful of times since mid-August. A very small handful. 

I sat there and the opening hymn was "I Know That My Redeemer Lives."  Part of the second verse sings:

He lives to comfort me when faint.

He lives to hear my soul's complaint. 

He lives to silence all my fears. 

He lives to wipe away my tears. 

He lives to calm my troubled heart. 

He lives all blessings to impart.  

I tried to keep singing, but after "silence all my fears," I couldn't. I sat there, alone (because William was home with Aaron and Michael was at the sacrament table), and cried. And a sweet, dear friend, who was on the stand because she was speaking that day, stood up, came down, and held me. She just held me while I cried. 

I was hurting, and I was rejoicing. He does live! And because He lives, we all will again too. But between now and then, we will go through some awful, really hard times, which will include saying goodby to Aaron. And that hurts. And I had been pushing so hard, for so long, and my body and emotions were just done. 

But she held me. And she stayed by my side until the sacrament was over and Michael came. And then she sat with me again during our second hour meeting and put two bracelets that she'd made on my wrist.

In the Bible, we read that in Gethsemane, an angel came to strengthen Christ. Today someone mentioned that they weren't quite sure what kind of strengthening that might have been. For the atonement to be effective, Christ had to hold all our sins and all our pains, all of everything. But it occurred to me that perhaps in just being there, being present, the angel strengthened Him and made it possible for Him to continue. She was my angel, sent to me when I needed her. 

Friends, this is hard! Aaron continues to have his ups and downs. He fevers and then doesn't. His digestive system works and then goes on strike. He smiles and laughs, and then will sleep almost around the clock. He's 13, thirteen!! There aren't very many boys with full T18 older than him. But he's not the only one, and I'm not the only one affected. He is a younger brother, a son, a brother-in-law and an uncle, a grandson, nephew, cousin and so on. He's a friend. He's my inspiration. He has a mission here on earth and I know he will be here until it's done. 

And it will hurt. And we will have those who minister to us, who hold us up and just hold us. I'm so grateful for the support and help. 

In the meantime, I'm slowing down. I'm trying to listen to my body and decide that while some things are important, others are not so important. I'm trying to just "be." If you're pushing too much, too hard, if things need to be "done" or "perfect" or whatever, take a minute. Decide if it really is that important. Maybe it is, but maybe it isn't. 

Be gentle with yourself. 

“Gentleness is very rarely taught, especially in regards to being gentle with ourselves.” 

~ Camille Grady

 

U-Turn (or Back and Forth)

I'm going to try to get the details (that we know anyway) down here. 

Infectious Disease decided to put Zosyn back on board due to the infection on his spleen.  

And then we did a CT scan of his abdomen which was negative, and his white blood count dropped, and his fever went away.

So they took Zosyn back off. 

The ultrasound is more sensitive but since he's not showing clinical signs of infection, AND he's been on two weeks of high dose Zosyn, plus another week with a five day gap, plus he's still on Bactrim. I mean, bugs that are going to survive all that....  Well, we know there are some but hopefully not these.  

So now (meaning currently but it could change) the plan is to finish his Bactrim on Saturday, watch him for about 48 hours, and if everything looks good, we'll head home.

But that assumes no fever, and that he gets back onto his home vent, and that we get his sodium levels back up into a normal range (because of course, why wouldn't they be wonky?).

However, he is back to his home sick vent settings and is off the nitric. We're working on weaning his oxygen, and I'm hoping to wean one of his heart meds although that won't keep us here. All in all, I think we've got a better than average chance of being home by Thanksgiving. Actually hoping for Tuesday. 

It's time. He's been here a month today, minus that 25 hour field trip that ended with the ambulance ride.

Fingers crossed.  

Home for the holidays...

"Life is not something we can manage or control. 

It's something we negotiate every time the path takes a turn." 

- Lisa Tawn Bergren

They See Him

I'm afraid I'm losing track of everything that's going on, but at least we're moving in the right direction now.  

He did end up on nitric oxide Sunday but weaned off his sedatives pretty quickly.  He couldn't continue getting his heart med every two hours (and he started demanding it every hour!) so nitric it was.  He also needed that second dose of TXA Sunday afternoon, but the bleeding wasn't quite as bad, maybe because we had the med bedside instead of having to request it from pharmacy.  

On the plus side of things, we did another bronchoscopy today and it looked really good! It was back to pink and not swollen, and when he coughed there was a little mucus but no blood, and no color to the mucus (TMI?).  He's also been playing today.

All really good things. 

His fever curve has gone up (and up and up). At one point he was 40.2 (104.4) but we're trying to keep him comfortable with Tylenol, Motrin, and ice packs. (I don't think I would be "comfortable" with ice packs. Makes me cold just thinking about it.)

Anyway, the thought had been that perhaps the fevers were antibiotic induced so we stopped those on Monday. He only had one more dose due anyway. (Remember, my plan was to take him home on Monday after finishing the antibiotics.) But that little three letter word: had...  

Moving rooms. This kid doesn't travel light.

Yeah. Infectious disease is now involved because we just haven't been able to figure things out, and they want a bunch of other tests. Most are very unlikely: mumps, Epstein-Barr virus (both negative), and some others. They also wanted an abdominal ultrasound. Basically, trying to rule out everything. I mean, their job is to look for the weird, uncommon issues that most people don't think of.  

And that abdominal ultrasound? 

1. Multiple echogenic foci within the spleen can be seen with developing microabscesses given concern for occult infection.

Yep, sick spleen. Several pockets of infection. But they're small, and it's better to try to heal the spleen if possible than to do without a spleen. And much better for Aaron to not have to have surgery. 

So the long and short of things (as they stand tonight) is that we're going to be here for a while longer. He's going to need more IV antibiotics and I don't know for how long. We don't even really know how long this has been going on. It's possible this is why he's struggled so much lately. They're also going to do another specialized blood test where they send it to a lab (in California?) that will remove all human DNA and see what's left, just to make sure he doesn't have a micro infection in his blood that might be a factor. 

It is what it is.  I'm grateful for a team that takes such good care of him, that keeps digging, that sees him, not his diagnosis or handicaps. 

And now, I'm going to bed, because I still have to go to work tomorrow. Just like I count on people here, I have people counting on me. It's good to be needed. 

“I’m not a superhero because I parent a child with special needs...

I’m the sidekick to my superhero.” 

– A. Krause Studio

Wrong Direction

He's on a lot of support, but he's stable (with the supports). He's currently on Precedex for sedation (but not Ativan) and the hospital vent with higher settings.  He didn't need nitric oxide, although we're giving his heart meds every two hours (it's usually every six).  After a couple hours, at 100% oxygen, he brought his sats back into his normal range, and over the course of the night, he weaned to 50% oxygen and a little down on his sedative. We haven't had any more bleeding. This part is HUGE! He is fevering, again.

I've never seen blood like that from him. In the past, if he bled, it quickly decreased and would often have clots. This didn't. It increased. Every time he coughed, he'd cough up more than the time before, and there were no clots. All frank fresh blood. 

We didn't suction outside of the trach. No way we wanted to increase any of this, so we only suctioned out what he brought up on his own. 

He'd had a bronchoscopy earlier which was not pretty. We couldn't see active bleeding, but that tissue was angry and red and swollen. And then then the bleeding started. His sats kept dropping. I know I saw 47%. I seriously thought he might code. 

He's getting some steroid drops into his trach to help calm it and the doctor used a somewhat new treatment to try to stop the bleeding. Tranexamic Acid (TXA)  has been used to control bleeding for years, but using as an inhaled treatment isn't that common. But since that's where the bleeding was, and we needed quick control, we tried it.

And it worked. 

So grateful.

Tuesday was a bit rough. In fact, that night I slept in my clothes expecting that we'd end up in the PICU again because we were on 15 liters of oxygen, which understandably makes the floor nervous. I mean, that's as much as they can deliver. There is no wiggle room.  

He did transfer down to the PICU Wednesday morning. And looked great. (Crazy kid.) There was talk of returning to the floor. He needed more oxygen again. Goal and plan was still for home Monday evening after finishing the IV antibiotics. So maybe we'll go to the PICU overflow. That was yesterday morning but didn't quite get arranged. And then yesterday evening...

Good thing we didn't go. What was challenging here would have been doubly difficult there. And we would have come back. Today's plan is to try to wean some of those supports. We're turning down his sedatives and spacing out his heart treatments.  If that works, we'll reduce his vent settings.  

And I have no idea when we'll get home. 

"Even miracles take a little time."

- Fairy Godmother, Cinderella

13 Years of Trach and Joy

Thirteen years ago I sat in the PICU by my baby. 

He was intubated, having failed (spectacularly) his extubation following his g-tube/nissen surgery and was on the schedule for a trach the next day. 

November 8, 2010 was the first time I saw my baby's face without any tubes or wires (except for the few minutes when he was supposed to have them but had pulled them off). 

I was scared, terrified might be a better word. I mean, it was his airway, his very breath of life. 

And it was the gateway to a whole new world. A world where he laughed for the first time. He grew, he played, he thrived. 

Today, I'm sitting in the same hospital but on the floor. He's sick. We think he's doing better. I mean, he did make it to his home vent Saturday evening and to the floor on Sunday. But in spite of workup after workup, antibiotics that should kill anything!, and still on higher doses of his heart and rescue meds, he is struggling once again.  

The night before trach surgery

He's still running fevers daily. This afternoon he has needed more oxygen, more heart meds, and he's tired. There's talk of returning to the PICU. Yes, again. 

Thirteen years ago, I sat as someone told me they thought I might be going too far. Taking care of a child with a trach and a vent would be too hard, too hard on me, on my marriage, on our children. Did I really want to go down this path? Did I understand what I was taking on? Did I realize that in adding interventions, it would be that much harder to take them away. 

Playing after trach surgery

Yes, I wanted to do it. (I mean, the only alternative was letting him go.) No, I had no clue (and knew I didn't) what I was taking on, but I hadn't shied away from hard things in the past. And sorta, in the back of my mind, intellectually, I knew that once we added an intervention it would be harder to take it away. But I also knew that I was sending a message, especially to my other children: Mom will find a way to handle it. There isn't anything that you will do or go through or whatever that will make Mom give up on you. 

We've learned so much over the past 13 years, but mostly, we've learned love. 

So while I don't know where this is going, I have faith that it will work out, one way or another. Strength is needed and will be given. 

Thirteen years. For a kiddo who outlived his life expectancy 4881 days ago, that's pretty awesome. 

And he's taught us to find joy in the journey. 

“The joy is in the journey, the struggle is part of the joy 

and the final destination is not an end but another beginning of another journey.”

― Kathy Boyd Fellure

Long Road and Baby Steps

Up in his wheelchair today.
Lungs work better when we move
around so this helps him.

He's making progress.

We turned off the nitric oxide yesterday and tonight we're hoping to make the jump to the home vent. 

He's still a ways from being stable enough to come home, but tolerating the home vent will give us a really good idea of where he is exactly.

So how did we get here? 

He did much better on the nitric and PICU vent, but then started having higher fevers and looking a lot more miserable.  Once his trach cultures grew out, we realized why. He didn't have just one bad boy in there, not two, but three!!  (Pseudomonas, Stenotrophomonas, and Klebsiella: try saying that fast!) And different antibiotics are needed for two, 'cause it would be too easy to have one kill everything, right? 

So he's on an oral (okay, g-tube) antibiotic, which is great 'cause we can do that at home. I mean, it's not like he doesn't already have dozens of doses of meds each day.  (I mean, seriously, he really does!) But the other is an IV only med, and he needs a 14 day course of it. 

Putting in a PICC line would mean we could do those at home, too, but this kid has some interesting vein anatomy on his left side which means we only have the right side of his body to work with. Too many PICC lines runs the risk of damaging the vein, and like running out of options for antibiotics, losing that option isn't good either. 

So the plan is to see how long it takes him to get to where he is stable enough to go home, and then decide if we want to do a PICC and go home, or just finish out here.  I think the (sorta arbitrary) marker I put was about five days out. If he's got five or more days of antibiotics left, we'll do the PICC and go home. But if it's less than five days, we'll probably just stay and finish here. Why five days? It just seemed like a good number.  He's currently about five days into them, so we've got about another ten days to go (I think). 

Our cute Piglet (before he got sick)

But the long and short of things is that we didn't treat it well enough before. We certainly tamped it down and he did get "better" but not "all better." And the five day gap we had between when we finished the first week and when we came back allowed it to resurface with a vengeance.

So when the doc tells you to take all your antibiotics even if you're feeling better, do it!! 

Sigh...  

Anyway, in our church, on the first Sunday of the month, we participate in a fast day. (The link can give more information.) We petition heaven for blessings and try to draw closer to God, wanting to understand His will in our lives. Tomorrow, we're fasting specifically for Aaron in our family. We are asking God to help him recover completely and be comforted in the process. It's going to take some time, so the comfort part is pretty important to us.  We would love to have anyone join us who would like to participate. You don't have to be members of our faith, or even Christian. We covet the prayers of any and all. 

I know they are real, and they are answered. I have felt their strength before as I have been given the ability to stand by Aaron's side and do things I didn't think I could bear to do. I am so grateful for the faith and good wishes of so many who combine to help him and, by extension, the rest of us. I don't have words to tell you how much they mean. 

“We’ll be friends forever, won’t we, Pooh?” asked Piglet. “Even longer,” Pooh answered.

- A. A. Milne

Halloween in the PCIU (Kinda Scary)

He's better. Not ALL better, but still better.

There are still steps before he can come home and they'll probably take time, but he's on the right path.

And if you've got medical trauma or PTSD, please stop reading now. I've got a lot to unpack here.

When I first brought him in just over two weeks ago, this is what I was trying to avoid. Or what this almost was, or something...

I could see what I thought was probably a tracheitis setting in and we had nothing at home that would help keep it at bay since he's resistant to tobramycin. So we came in, and we thought (sorta) that it had been treated. But in the back of my mind was this niggling voice that said, "pulmonology said that if he got an infection, our only option was two weeks of IV antibiotics." TWO, not one. But I didn't speak up. I don't always do that even though I know I should. And we all know now that it wasn't Anxiety talking to me, although she does have plenty to say. 

We're not completely sure that's what it was/is, but that's because this kid has so many different things that can/do go on it's hard to pin down just one. 

Yesterday was hard. He was on 100% oxygen on an ICU vent. The vent was a step below what he usually ends up on but much more powerful than our regular one. We still struggled, even with higher support settings. He didn't want to come up even to the mid 70's on his sats.  His blood pressures were low so they started him on norepinephrine. 

I had visions of following the path we were on back in June, just before his birthday. It was not good. 

And the doctor suggested I not leave the hospital for at least the next couple of days. 

That is NOT a good sign.  

My Mandalorian, the strongest,
bravest guy I know. 

Later last night we switched him over to the more sensitive ICU vent and this morning we added in inhaled nitric oxide (INO) and then gave blood. For some reason, his red blood cells have really struggled the last few months.  And he's fevering.

And we're seeing good things. He spent a couple hours up in his wheelchair (which is good for his lungs.) His oxygen has weaned from 100% to 50% and his INO from 20ppm to 5ppm. We're going to hang out there for a bit without making changes. He's satting in the low 80's, which is just fine for him. They've stopped the norepi. He's still on IV antibiotics and we should know more about exactly which ones he needs soon. 

He's doing better. Between the blood and antibiotics, I'm hopeful that we'll continue the upward trajectory.  I'm hoping we're going to avoid full-blown sepsis. 

They're running labs on his blood levels, hoping we can figure out why he's needing so many transfusions. It's likely that he'll need to start getting weekly subcutaneous injections, but they'll teach me how to do them so we don't have to come in. I'm a little nervous, but hey, we already do g-tubes and traches and a bazillion meds, so one more? Why not? (I guess.)

I'm hoping we're done with the tricks and on to the treats. 

"I'm not leaving my fate up to chance."

The Mandalorian