Update 4.26.18 – Day 40 – Riley’s Spring PICU Stay

Thinking back to my last post a little over two weeks ago, I don’t feel like we’ve done a lot, at least in the way of progress, but our little goofball truly has. Last major update, Riley had been struggling on his BiPAP, and not really able to come off of it at all, and then he showed us quickly how bad off he was by tanking and requiring going back on the breathing machine on Sunday 4/9. Since then he’s had a brain MRI (probably like his 6^th or 7^th…), been into the OR with ENT, CT scan, and back into the OR with ENT. As of mid-day Monday, we were able to successfully remove the breathing tube again, and hopefully this time it sticks, and sticks well so we can work on going home sometime in the next few weeks. My hope, and told him to make it his goal, is to be home before Mother’s Day…that’s all I want from him this year.

His MRI a few weeks ago showed that there is still progression in his underlying degenerative neuromuscular disease. His last MRI was in early July, so progression from then is minor, like it basically has been with each scan, but still there. Nothing to indicate specifically correlation to his airway collapsing the day prior. Thankfully. Because of his stridor (humming sounds during exhalation), and airway collapse, we pushed and finally got ENT to take him into the OR to evaluate his airway. Much to their surprise (not ours), they found something! He had an abscess on his left vocal cord (which led to a staph infection). They did everything they could to clear him out, and he went through a course of 10 days of hard core IV antibiotics, just finished over the weekend. The CT scan of his neck last Monday showed a little bit of something still in the area, so he went back into the OR last Wednesday. The infection is thankfully gone, and all they had to do was minor granulation tissue clean up. ENT gave us the green light that he was ready for extubation shortly after, which was a green light for us (and ICU docs) to start working towards extubation.

   

Thankfully over the weekend as he started finishing antibiotics, his goofy personality started coming back and he started to seem more like himself. Was able to fairly easy to get him off his sedation medication and get him in a good spot with settings on the ventilator that mimic his BiPAP settings. X-ray early in the week looked to be one of the best I’ve ever seen from him. So, Monday around noon, myself, both grandmas, nurses, RT and docs gathered in his room to help him pull out his tube. He was pretty happy about it leading up to it, totally showed us that he was more than ready. Mama doc got to help get the tube out and suction out all his secretions so he could take some big breaths on his own. I had given him “our talk”, regarding that he’s allowed to cry because it may not feel good (especially taking the tape off his face, which he hates), as long as he takes some good deep breaths, which we discuss every time. He listened really well and rocked it, best extubation I’ve seen from him!

First few hours on Monday after the breathing tube coming out was a little rough just from a stand point of him having extra secretions and keeping his oxygen levels in check. Wasn’t overly surprised, as it’s a big jump for his body to transition like that, his brain takes a bit to catch up realizing that it needs to do some more work than it had been doing. Tuesday, he was super comfy all day long, and secretions were much more manageable. Last night sounded like it was fairly quiet, I got to sleep at home for the first time in days, as Chris has been sick with a bad cold. Thankful both of my boys are starting to feel better.

Yesterday we had hoped would just be another day of rest. Somehow, he missed an early morning respiratory treatment (which has been addressed), so he seemed a bit behind on the amount of secretions and little harder work that he’s needing to do to catch up. He napped pretty comfy in the morning, but kept me on my feet most of the rest of the day helping nurses, RT and docs keep his numbers stable. Tons of junk that seemed to come out of nowhere, especially after a restful day the day prior. He basically needed respiratory treatments constantly at one point to keep moving stuff and getting it out of him, and extra oxygen to keep his numbers from dumping. I could tell that docs looked a little nervous about how he was doing, knowing that they had re-intubating in the back of their heads if we couldn’t get him under control. We went up on his BiPAP settings to open up his lungs more, and kept on top of respiratory treatments every two hours (so you know he slept amazing through the night with that….ha).

Managed to keep him stable so he’s still on BiPAP, and looking much much better today. No extra oxygen needed, but going to stay on the bit higher settings to keep him well opened up. Secretions are better too, he doesn’t have a constant rattle in his chest anymore, and he’s not dumping numbers at all, unless he’s pissed. His oxygen went down into the low 80’s after his 9am respiratory treatment and people were nervous about him looking like he’d start repeating yesterday. But, rest assured mama knew there was a different reason, he was mad about needing to be changed. Fixed that, fixed his numbers. When he starts setting off alarms for specific reasons to get attention and get what he wants, verses actually being in trouble, means he’s starting to feel better! Knows how to do it well at home 😉

   

Today we’re going to try and only do respiratory treatments ever four hours, to allow him some rest in between, and hopefully set him up well to maybe start small breaks off his BiPAP tomorrow. Labs and supplements are continuing on a daily basis, but seems to be more stable now, which makes sense as he’s starting to feel better. Actually, able to back off some of them today. So far so good in the decrease in his ketogenic diet ratio, so hopefully we’ll be able to stick where we are at on that to go home on. Other than that, not too much else to report! My guess, the soonest we would be home would be later next week sometime. He needs to be able to successfully be off BiPAP for 6hrs before even leaving the ICU (from just a respiratory standpoint).

To our wonderful family, friends, neighbors, co-workers, nurses, and doctors…thank you again for all your love and support. We certainly didn’t anticipate coming in with a “stomach bug” and being here for well over a month (with still a chunk of time to go)! My hope is we’ll be home sometime next month (which is somehow next week already), and he can get back to preschool for at least a few weeks before SUMMER BREAK……………..

2018 PICU Stay Day #23

Note: I started writing this Thursday night, continued Sunday morning, FINISHED Monday Morning ;-P

Sometimes I question how many times we can go through troubles and heartache like this. Every year I dread spring. We get through winter bugs like nobody’s business, but come the change of season no matter what we do, minus all of us living in a bubble, shit hits the fan. And kind of literal this time, which we were not prepared for. Riley has thrown lots of curveballs in his 4 ½ years, with random symptoms of his underlying unknown degenerative neuromuscular disease, but a GI issue gone crazy….to land all of us in the hospital for over three weeks with not much light at the end of the tunnel…who knew? Leave it to this kid, nothing is normal and straight forward.

(Packing up at the house...waiting in the ED to be admitted...hanging out with an upset tummy...getting a special CT scan to check his GI tract...)

The last time I sat down in wrote, I was bored out of my mind during a long scheduled mundane appointment at Children’s. Tonight, I’m home sitting comfy in my green “movie chair” in the family room with Blue Bloods in the background, laundry running, Sadie curled at my feet, freshly made taco makings wafting through my kitchen…while both my boys are hopefully either both asleep, or our kiddo comfy and tucked in and papa bear headed that way, with a much quieter night than the past few. The dreaded and untrusted RT showed her face again in our room tonight, and papa bear is making sure she’s taken care of, in a more respectable manner than I would if I was there tonight…..

(Post endo & colonoscopy, where he failed to make it through on sedation w/just BiPAP, as I explained to docs that was the probability of happening; and with his puppy from his buddies and teachers at school, and Super Grover of course) 

Tonight, I write to give updates on our past three-week 2018 spring stay at Children’s. Not everyone has FB for my almost daily-updates, and being here and dealing with everything, individual updates can be daunting and exhausting sometimes. So, I write. Good thing I like to write. I get to voice my opinions and mama bear feelings.

Riley has been having a hard time tolerating his feeds (strictly gtube fed through his tummy) for the past few months. Nothing super specific, or super concerning, just the occasional irritability and extra gas, which gradually got worse. We thought the increase correlated to the change in his caloric intake in his ketogenic diet recipe (as he gained a random 4+lbs at the end of last year). Changes in his diet usually take a week or two of getting used to, but get better. He didn’t. It got to the point of him still being pissed with running each feed less than half what he’s use to. St. Patrick’s weekend was the tipping point. Bit of TMI, but he started having a little blood clots in his diapers, which quickly graduated to a lot of blood, and that was the last call. In to the ED we went the day after our St. Pat’s party, ugh….knowing we’d probably be admitted, so had all of our bags in tow. Where hoping for maybe a few days with something “minor”. I don’t think this kid knows the meaning of the word.

(Hanging out Easter weekend, post first-extubation)

We are currently on day 22 into our 2018 stay. With at least a week, plus, to go. I’m done trying to predict when we’ll go home, because when I do, some other “shit” hits the fan and we back track. Last week’s shit was problems with his secretions. They suddenly got really thick and hard for him to move them, and hard for anyone to pull out of him. So, mama bear ordered a chest x-ray and respiratory viral panel. Everything checked out normal. Next step was to take away his glycopprolate medication that he’s on to help the amount of secretions (that med has a fine line in dosing to either help secretion amount, or make them thick, if too much is given). Thankfully his secretions seem to be back to normal, and he’s back on his normal dosing of glycopprolate to help with the amount, especially since being on his BiPAP just blows them around constantly.

(Hanging out irritated with the breathing tube, happy without it on BiPAP)

Now that we have control of this issue…it’s become obvious we might have an even bigger one on our hands. His airway. This is where I want to yell, scream, curse and cry. It terrifies me, I can’t and will not bring him home until the issue is figured out and resolved, somehow. I won’t risk him having some big event at home, where his airway somehow collapses. Since he was extubated a week and a half ago, he’s been making little “humming” sounds. We thought at first it was just his voice coming back, and were more focused on getting his secretions under control. But over the past few days his secretions have been more normal, and the humming has become obvious it was with every exhale, so not purposeful. ENT did a bedside scope, and sure enough showed the vocal chords closing with each exhale, creating the sound. They weren’t overly concerned about it, and there didn’t seem to be any upper airway (above the chords) damage or irritation. Now of course yesterday (Sunday) he started making kind of a wheezing sound with inhales on top of the exhale humming. He didn’t look very comfy all day, little higher heart rate, hard time getting coughs to move above his chest, and on BiPAP the whole time. I knew in my gut something wasn’t, and hasn’t, been right. Slowly working with docs to come up with noninvasive ideas to try and help, but he decided to show everyone how bad off he was, and quick.

(First momma snuggles in like a two and half weeks)

Shortly after his 4pm respiratory treatment, he started struggling more. RT got out really really thick secretions (very impressive for them and me, for what we all know what “normal thick” looks like) out of him after cough assist. And he started having oxygen issues, trying to recover from having that junk pulled out of him. He quickly spiraled not being able to take any breaths, and tanked hard and fast…having a staff assist called (pretty equivalent to a code blue). I watched in tears as doctors raced to save him. I’ve experienced him being “bagged” more than I care to even try and count, and rescued like this a fair amount of times too, either due to respiratory or seizure problems. But I’ve only seen & been terrified of losing him in a situation like this twice before (once due to a massive seizure and once after trying to extubate and him immediately failing).

What seemed like hours, but reality probably not more than a minute, they had his oxygen and heart rate coming back up with the bag, never needing chest compressions. Thank god, don’t need broken ribs on top of all this. Once he was stable with the bag breathing for him, anesthesia was called (and I made sure it was not the same woman who did the harsh first intubation causing him to lose 8 teeth, and possibly doing god knows what now to his airway). They looked with a camera prior to trying to get the tube in and found that his vocal chords where closed. We had several different sizes of tubing to try, but if the doc couldn’t get the tube through the chords, our next option would have been a bedside trach. Godbless that doc for being able to somehow slip the tube through his vocal chords. After the hour plus of chaos, hooking him up to the vent and cleaning up, we were left with a drugged and tired boy. But still here and getting the air, he needs.

This morning he’s a little stoned on some sedation medication to keep him comfortable, but has opened his eyes frequently and even squeaked out a few smiles for both myself and Chris. Just finished with rounds, and doctors have his brain MRI set up for 7pm today. We were insistent on having it done on a particular higher technology machine, to keep his pictures consistent with all his previous ones. The one time it was done on a lower grade machine, his disease appeared to be more progressive than it actually was/is. I’m sure we won’t have results on the MRI until sometime tomorrow, hopefully at least by morning rounds. Depending on what it says, the next step would be for ENT to take him into the operating room to safely (as possible) evaluate his airway. Which requires them pulling the breathing tube out, so they can see exactly what his vocal chords do, along with the rest of the airway. Feels certainly risky to us, but it’s the only way to evaluate and in the safest environment as possible. Doc are confident if the MRI doesn’t give us a clear answer on what/why this happened yesterday, and ENT goes in, that they should have no problem getting the breathing tube back in, as it went in with ease yesterday bedside.

(And it's back in...)

We are all so incredibly blessed with amazing family, friends, co-workers, and neighbors. We came in for what seemed like a common issue, might be in a few days. Now day 23, 2^nd round on the vent, and both of us not exactly sure what day it is….it’s spring right?! ;-P Chris has been able to go out to work most days, and manage his guys from here on days like today. I’m blessed to have amazing women that I work with pick up some slack where I need it, and be able to remotely do things (which at times is a nice distraction vs binging Netflix) from here, that I would normally be doing from home anyway. If we didn’t have understanding and compassion from work, good lord who knows what stress levels would be like. And friends and family members jumping in to give us breaks, offer things up, and show their love and support helps get us through each day.

I don’t know what the next few days will bring us. I have to keep reminding myself to stop trying to overthink things and predict the future, and to not go down (too big of) rabbit holes on the internet trying to figure things out and find my own crystal ball. This kid does what he wants, and does what he can, and that’s all I can ask from him. He’s more stubborn than Chris and I combined, and has the fight and drive to continue being a goofball, as long as his body will let him. And wonderful doctors and nurses who can’t get over how big he’s gotten, how awesome his hair is, and his adorable smile, that would put in 110% anyway despite all that, certainly has not been a negative. I thank them every night in my prayers for keeping by smiley goofy little man with me and his daddy.