Been a while...

It's been a long time since I've updated my blog-since early August to be exact!  Since then we've dropped our oldest off at college at the University of Arkansas on August 14th and we were the crazy parents who stayed all weekend. Other parents dropped and ran, cut the cord cleanly, but noooo, not us. And I'm glad we didn't. We got to see our sweet girl's smile get bigger and her confidence grow in just one short 3 day weekend as she realized she was basically on her own.   We got to take her and her new roommate to dinner and her high school friend to lunch and hear all about the beginning days of Rush. 

Then I cried at Zaxby's the next day while ordering my chicken strip meal combo and the waiter asked me if we had just dropped off a college kid and where we were from. Yep, busted out in tears in the middle of the restaurant. 

The next week was a whirlwind of emotions-even though she hadn't started classes yet, Rush took up the majority of her day, every day, and she couldn't have her phone on her.  We got to briefly chat each night. My excitement for her grew as she talked about each house she visited and their philanthropies and missions.  I was fortunate enough to be able to drive back down to Fayetteville on bid day and experience all of her hard, grueling, mentally and physically exhausting week come to fruition when she received a bid to the Alpha Delta Pi Sorority House.  In the ADPi House my girl has found all the sisters she never had. She's found her niche, her place in the world and she's thriving. 

We miss her in our house and the bald kid sure had a hard time adjusting to her being gone. The first time she came home he ignored her for the first few hours-I think he was giving her the silent treatment for leaving him. 

She's been partying it up, but she's kept her grades up. It helped she took several college credit hours with her, so she doesn't have such a heavy load this first semester. We've assured her it's ok to say no every once in a while to an invitation-and stay at the house or in her room and just hang out. When she has been home she's spent more time sleeping in my bed, watching Grey's episodes than anything else. Moments I wouldn't trade. She's about to be home for a month and I'm sure she'll get lots of rest and be bored with us in a matter of days!  Hailey's houses philanthropy is The Ronald McDonald House Charities-so save all your pop tabs for her-she gets diamond points towards qualifying to live in the house next year. If you have some-just let us know-she'll come get them during break! 

Parker is a junior in high school and has expressed an interest in joining the military upon graduation. He's stepped up and helped us out around the house and with the bald kid a lot in Hailey's absence. But we are really struggling with him and his grades. It makes me crazy and stresses me out that he's doing poorly because he's so smart, just has a lack of motivation. Brian and I are  struggling find something to motivate him. He still doesn't have his drivers license so we are going to put him in a driver's class this month in the hopes he can get his license in January. I'm hearing  from other teenage boy moms that this is pretty normal behavior. I hope so, because I'm really beginning to feel like a failure at this boy mom thing. If I'm not a screaming banshee about his grades, or not turning in his homework I know he's done, it's not a normal day in our house. At least the bald kid won't be going to therapy because of me someday! 

And the bald kid, he has been doing great!  His cardiology appointment in October showed the Melody valve placed in Boston 2 years ago is working as well at the day it was placed!  Such a relief and a blessing. We are now only seeing the great Dr Kaine yearly!  Yep yearly visits!  Woo-hoo!  But, life is simply not that easy in the bald kid's world-and we found him to have maldescent of his tested. Meaning: his poor little balls didn't fully drop.  Off to see Dr Murphy in Urology to have those brought down and a little 2mm hernia in his left inguinal area repaired. Unfortunately a few days after surgery, and we think, as a result of being intubated, his asthma flared up and he spent 4 days at the big house; Children's Mercy. He just needed a little oxygen and steroids and he was home by Thanksgiving.  Our next big procedure with Ethan is taking him to my friends in the Interventional Radiology Department at Mercy and have his salivary glands injected with Botox. We are going to try this to see if it helps with his constant drooling. His drooling has become so bad he has a constant rash on his face and he gets choked up on his own secretions. We can't risk a winter of aspiration pneumonias with him. I've heard mixed results of Botox helping this-so if any of my special club members have any experience with this-I'd love to hear from you! 

Brian and I are same old, same old. Working and not taking care of ourselves. That's going to change this month. I was just started on blood pressure medicine because I've had terrible headaches for over a month and my pressure has climbed high enough I'm a walking stroke candidate. Since my husband and son can't manage to get the dishes done after dinner, I'm not going to trust them to keep me looking presentable should I have a debilitating stroke. God forbid they realize when my eyebrows need plucked and face needs waxed and dress me in mismatched sweat outfits with drool and food spills on my shirt. So, I'm safer to take my meds, get healthy and prevent that from happening.  We purchased the Hitch Fit couple's weight loss online program last year and we know what to do-they spell it all out for us. We are committing to starting and sticking it to it. So if you see me with a Coke-feel free to call me out on it-and take it from me please.

  Our Thanksgiving was wonderful, spent with family at a time a friend just lost her Mother, I know how lucky I am to still have both my parents and don't want to take for granted that will always be the case, as I know it won't. 

We haven't spent much time with our friends lately, and haven't been very good friends. We are bringing back the Rawley White Elephant Christmas Party this month and hope you all can make it! It's always been a blast in the past-this year promises not to disappoint! 

We've talked a lot about buying experiences rather than things lately. And agreed not to go all out for Christmas, but rather be more present with each other.  We are collecting items for our local elementary school kids through a program at my job to help provide them with Christmas gifts. Toys, socks, hats and gloves and gift cards are welcome, along with cleaning and personal supplies. Parker has also taken several names off the Ornament Tree at his school we will buy gifts for. So far it's been toothbrushes and toothpaste-and this breaks my heart as I know too many kids out there are getting necessities for Christmas gifts rather than something fun. We take for granted that the things we need everyday like toothbrushes and toothpaste and personal hygiene items are bought without a second thought. That I can load up my shopping cart at a store and check out not worrying what the total will be, because I know I have the money in my account. Yet watching a woman next to us have to put items back because they cost more than she had, and my wonderful husband then paying for them for her and her kids.  We're not rich by any means, but we can sure afford to help others out and that is our goal for this season; random acts of kindness whenever we can. Paying it forward as people have helped us in so many ways. 

This has been a long post, and as always I will promise to post more often.  In the meantime, I hope the Holiday Season finds all of you well and happy and healthy and I hope you too can help bring a smile to someone's face with a small act of caring. The reward is a feeling like no other. 

Cecil the Lion vs so many other issues...

 I'm hoping you read the blog link I posted in FB before this post, but if you haven't, here it is-and please read it. It was shared with me by an old friend I have a lot of respect for, and has seen a whole lot more of this big spinning ball we live on than I have:

Everyone needs a little Grace In their lives 

Gilandamy.blogspot.com

I was just talking to my husband about how I want to contact a nurse friend of mine from CMH who has done some mission nursing work. Bobbi-I'm talking about you in case you can't tell ;)

And find out how I can go about joining her on one of those.  And then I read this blog.  

I had this same discussion with some co-workers this last weekend: a dead lion has gone viral but kids with no water doesn't affect social media the same way. 

People die of malaria-which we simply do not have in the U.S.-and a $10 net could save their lives. Just ask my Uncle Clifford Rawley who supports malaria nets for Africa with a basketball shooting fundraiser: Nets for Nets. 

We complain about our government but we get to vote our leaders in. Some of these countries have terrible dictators who live a lavish lifestyle while their country lives in poverty.  And not one of my friends on FB reading this lives in true poverty like in many African countries. 

And as I send my oldest off to college next week, encouraging her to 'make her mark on the world', I wonder what mark I will leave. And if it's one my kids will be proud of me for. 

And though I love animals dearly, and it's terrible that Cecil had to die that way, my heart aches more for hungry, starving children and HIV rampant countries and women being raped and people working for $1.25 a day and parents who walk miles every day for water for their families. 

As I turn on my tap to get a bedtime glass of clean ice water and lie down in my Tempurpedic bed in my air conditioned house with full electricity  and prepare to go to my job that pays me far more than $1.25 a day, Cecil seems far less media worthy. 

But then again, those other things mentioned probably make most people squirm a little uncomfortably, and we don't like uncomfortable now do we?

Flaws

So I had a little dental work done today.....

5 hours of being in a dental chair little.  

When I was 8, my newly permanent front tooth was knocked out completely courtesy of my big sister Kim pulling me off a bathroom cabinet. I hit my open mouth on the hard counter top and it split it in half. Long way. The next day the other half fell out in my breakfast cereal bowl. 

Needless to say, I have had years of dental work. From a partial flipper of just that one tooth until it was permanently placed in high school. Then a bridge placed 2x through my adult years. 

And I've never been completely happy with how it looked. Don't get me wrong-each change was an improvement over the previous one, but I still hated the way my smile looked. It bothered me in all my pictures. 

Most of you have no idea my 3 front teeth have been fake for the last 36 years of my life. And until I post the pics and point it out, you probably have never even noticed. 

But I knew it. And they bothered me. 

It was a flaw. 

One, that to me, stuck out as big as if it were a third eye in the middle of my forehead.  And I longed to have it fixed. So today, I did. 

And Dr Erica Fisher and her staff at Family Dental Care did a fabulous job!  I am ecstatic at how it turned out. 

Here is the smile I've had for the last 9 years-which is the last time I had the bridge re-done. And you will probably not notice what I hate about it-but if you look, you'll see how my 2 front teeth are HUGE compared to the teeth on either side of them. I feel like I look like a chipmunk.  

See-chipmunk teeth. 

Today-in stages:

Carbocaine injected in my gums pre-pulling of the old bridge. 

And this is your mouth on meth...lol. 

No seriously-the missing the middle tooth is where my permanent one was knocked out. Over the years, I've had the other two shaved down for bridges. 

Nice huh? 

Finished product!  I love it!!  

See how perfectly lined up they are?  

I seriously am over the moon with how gorgeous they turned out. 

Now, I'm sure some of you are thinking I'm a vain bitch complaining about a few uneven teeth. But inside, it really bothered me every time I looked in the mirror.  

It was a flaw. 

A superficial flaw. 

A cosmetic flaw. 

And I hated it. 

And now it's fixed. 

And I can't stop smiling. 

(Or running my tongue over them because they are so smooth and even now!)

So let's talk flaws. 

We all have them. 

Some are cosmetic, like this one. 

And I'm sure nobody, not even my husband, can understand how much it bothered me. Or that it even did. 

But it was my flaw. 

My crack in a perfectly smooth surface.

My third eye. 

And I took the plunge to fix it. 

To make it prettier, better, to make my smile what I've always wanted it to look like. 

Some flaws are not cosmetic like this one. 

Some are character flaws. 

Being judgemental. 

Big flaw. 

I've got that one too. 

I jump to conclusions when I see people. 

Heck-when I see a person with a mouth like mine in that picture up there, I automatically assume they do drugs. 

Or don't have good hygiene. 

I don't stop to think that maybe their sister knocked their teeth out and they haven't been as fortunate as me to have parents who could afford dental care to fix them. 

Big character flaw. 

And one I am working to fix. 

Every single day. 

One that we all have. 

And one that we can all work on. 

That cheesy saying about  "be kind, for everyone you meet is fighting a battle you know nothing about"  Wendy Mass the Candymakers 

Well, I've always tried to live like that, but I'm not perfect and I've been judgy and condemning. 

Flaw. 

And only I can fix that flaw. 

It was easy for me to fix the cosmetic flaw I had. It will be harder to fix the character one. 

But every day that I look in the mirror and smile and see that one thing that bothered me was fixable, I know that is one more day I have to work on my other flaws. 

That I have another day to be less judgy. 

Less condemning. 

Less assuming. 

Wouldn't the world be a wonderful place if all our flaws could be fixed in 5 hours?

With each smile, I know that it's my opportunity to continue working on my personal flaws.   

And my opportunity to be kinder. 

And my opportunity to help someone else fight their battle I know nothing about.  

I encourage everyone to think about their personal flaws. 

Cause we all got 'em. 

And if we all worked on them one smile at a time, this world would be a much better place. 

Thanks again Dr Erica and Jenna and Kim and everyone at Family Dental Care!  

Rawley Re-cap

While Hailey is back in the OR having her tonsils taken out, I figured I would do a little update. 

Rawley life is as crazy, hectic, hair-on-fire, hot mess express normal as usual. 

In a nutshell: 

Ethan had two admissions so far this year-doing awesome now. Asthma under control.   Endocrine has decided his little testes have not dropped enough and stayed down-so off to urology surgeon Dr Murphy in October for probable surgery.  

Parker finished his sophomore year (barely) just turned 16 and just got his driver's permit. He has decided not to play football this year, but focus on his grades and choir and is working towards raising money for a choir trip to Austria next spring. Starts his Junior year in about a month. 

Hailey graduated from Staley with the Gold Medallion degree-the highest honor in the NKCH District.  She is off to University of Arkansas in 30 days to major in Biology with plans to attend Medical School and become a Pediatrician that works with special needs kiddos like the bald kid. She is also enrolling in the Air Force ROTC program through UofA. 

Brian is still working days with the KCPD at the Shoal Creek Division Station and it is his 21st year with the department.  He is also working with another company doing fraud investigations and claims cases-which is setting him up for his retirement job. 

I am working full time again at NKCH and love being back with all my awesome co-workers!  I am 3 years cancer free and counting. 

We took a fabulous family vacation in June to Florida. Spent a week on Universal property and had an absolute blast at the parks! I rode more rides than I did the last time we went because I figured it was 'now or never' and I'm living and looking forward with no regrets and no missed experiences. Even if that experience was only Dr Doom's Fear Fall!

 And I loved it!! 

Parker even took on some rides he wouldn't do last trip!

Spent a few days in the Tampa/Clearwater area-gorgeous beach BTW and had the best seafood ever at Frenchy's! 

Most of all it was a whole lot of family time spent laughing, and fighting and just being crazy weird together before Hailey is off to college. 

Awesome memories were made!

Perfect timing because the Surgeon just came out and said Hailey Jayne did fantastic-tonsils were huge and full of holes and puss pockets and it was a good call getting them out before school. 

Now to get my loopy girl home and settled before I head to the cancer center for a shot. 

I promise, pinky swear, swear on my children's lives I will update this blog more often.  

As a matter of fact, I will be updating again later today or tomorrow, so stay tuned!  

 

Summer Vacay 2015

I wish I had better service to blog, and when I get sat down somewhere with some time and the ability to load all my photos I will bore you with them all. 

Long, long, long story short: we made it to Florida via car with few issues. I mean, after all, would it really be our life if there weren't some sort of drama???

I'm just happy the tray attached to the Pilot hitch holding all our luggage and E's new $10K wheelchair didn't fly off on the highway somewhere. 

We've run around a lot since we got got here and today me and the boys are enjoying Islands of Adventure. I'm blogging in the child swap room of the Jurassic Park River Adventure ride with the bald kid while Brian and P get all wet first. 

Hailey came down with strep-I'm sure all her "I'm all graduated, 18yrs old, outta high school, almost to college, working enough to have a little spending cash, staying up late" days have just caught up to her and she's worn out. 

Needless to say, she will join us tomorrow as we probably hit Magic Kingdom. All I can say is that I cherish having these days with my family, and appreciate all my hubby's hard work to get us here. 

Now it's my turn to get wet!  

This little bald boy of ours.....

It's been a whirlwind of weeks around the Rawley household. Days run into nights into weekends into weeks and then this happened:

A note came home from school that Ethan was standing with very little assistance from his OT. 

What!?!?!  

Gotta see it to believe it, and this picture came home the next day. 

I cried. And cried. And cried. 

All happy tears. 

10 years 11months we waited for this day. 

We listened and nodded and smiled as educated people told us this day would never happen. 

And now I'm nodding and smiling watching this boy prove them wrong. 

He totally takes after me in the stubborn department. 

And here he is being silly with Hailey at home.  

First he wouldn't put his feet down and support his weight. 

See how his feet are crossed and he's letting Hailey do all the work?

Then he decided to lock his knees and stand up. With little support from Hailey. 

Then I think we all cheered and he started laughing and buckled those long legs into a heap on the floor.  

Fast forward another couple weeks and this note came home from school on Thursday. 

4 days before his 11th Birthday. 

And I know you probably can't read this, but it basically says Ethan communicated pain and its source to his teachers today at school. 

He answered a series of Yes and No questions on a program on the iPad and he was able to tell them his head hurt from his glasses and that he wanted them off. 

10 years, 11 months, 26 days. 

And the bald kid told them what was bothering him. 

Again, 10 years, 11 months and 26 days of us using our best guestimates at figuring out the bald kid came down to his eyes/head hurt from his glasses and he wanted them off. 

Guess it's time to take the bald kid to the eye doctor for some new glasses. 

I suppose this time we will let him pick out his own. 

Back in the routine!

Ethan was discharged Wednesday afternoon after a good night on Tuesday. He was able to stay off his oxygen most of the night, dipping down to 90 occasionally at which point his nurse would go in and reposition him. Once he was awake, he was hanging solidly at 95 with no oxygen!  

The team came in and decided to cut him loose!  

So we bundled him up and masked him up so he wouldn't get any germies and left as soon as we could! 

He went back to school on Friday and did great, other than a nap on the bus on the way home.  Being back at school wore him out!

He's still doing well at home, and we have a follow up with his pediatrician on Monday. 

Thanks for all your prayers and good thoughts our way. This was a long admission for him at 2 weeks and a day, and an exhausting one.  

Hopefully it's our last one this year! 

Holding steady

Ethan has been in a slowly improving, steady pattern for a couple of days now. Which we are fine with and the team is fine with. Our first year doc, Dr Jeff Lowe, is so awesome and totally gets Ethan and appreciates how fast he can change from ok to crapola, that he has no desire to push him. 

He has come down quite a bit off his oxygen- down as low as 0.12 liters. But he tends to work a little harder breathing so he's been very comfortable at 1/2 liter. 

He's tolerating full feeds, even with some additional water added. We are just spacing them an extra hour apart to make sure we don't overload him. 

He's slowed down from the other end a bit too-but did give the nurses two big surprises the other morning. So big they had to change his entire bed and bathe him each time. We don't call him stinky for nothing. The antibiotic is officially finished-you know-for the pneumonia he doesn't have. So that should help with the stooling. And we are keeping him on the twice daily lactobacillus for a while. 

He got his immunoglobulin infusion on Friday. Which meant vascular access came up with the med and supplies and I primed the pump and prepared it all, but they actually stuck him. Oh well, protocol is protocol I suppose. I'm just glad he got it! 

The IPPB treatments are really helping clear all the fluid out of his lungs and he sounds better and better each day. 

I attended the Asthma class on Friday, and learned a whole lot about the meds he's on and how they work and how long it takes them to work etc. We will have to work harder at keeping his asthma better controlled when we go home. Not that it was out of control, but we kind of lived in the Yellow Zone all the time and I'm gonna work towards keeping him in the Green Zone. My fellow asthma families will get it. It sucks. Especially with a kid that can't tell you he's sucking air. We have all got to be a little more observant with him. So I will be crazy for the next few months.   And they have told us that with his asthma under control and even if he gets no more viral illnesses, this is probably going to take a good month to get him over. 

With that said, we could very well be going home with some oxygen for nighttime and a bipap machine to do our own treatments at home. If that is the case, discharge won't be until Monday or Tuesday. Ahem. At least he will be better!

I'm working overnight tonight and Brian has to work at 5am so the staff is letting Big sissy Hailey spend the night with the bald kid. He's been a little fussy today because he's lonely when someone isn't there to entertain him so I'm very grateful they are letting her stay. 

He was so happy to see her-she hadn't been down all week with school, volleyball and work. 

He was all smiles when she hopped in bed with him:

And then she tried to do some homework, and mr. 'It's all about me' decided the best way to divert her attention back to him was to pull his MicKey button out (feeding tube)

This is him, oh so happy with himself, waiting on the resident to put a new button in. Hailey can do it-but they won't let her. 

Then he decided to poop all over his bed. 

I will spare you that picture that Hailey sent me ;)

It seems now they are hunkered down for the night-Hailey with The Office and Ethan with his light up turtle. 

Gotta get back to work-will update tomorrow evening. 

Thanks for all the good thoughts and prayers. 

And thanks to the Mertz Family for the dinner!  Much appreciated, and delicious!  

Keeping everyone on their toes...

Ethan is pulling his typical 'I don't follow any textbook' routine. 

He got to the floor yesterday afternoon and did so well!  He got a couple of feeds, stayed at 94-96 on 1/2 liter of oxygen, and slept soundly. Then, his witching hour, 7pm, was upon us and he dropped his sats to low 80's and had to be bumped up to 4 1/2 liters to even keep him at 92. His feet got puffy and his skin got mottled again. He also tried to throw up his last feed. Fortunately the resident that came up had some common sense and was wiling to give him an additional dose of Lasix and let us hold his feed off for another couple hours. 

He lost his IV the other day, so we needed to try and get some nutrition in him, but he's walking such a fine line between that and being fluid overloaded.  And some of his electrolytes were getting a little out of whack, so he really needed some formula.  As a compromise to sticking him, we added some free water to his formula feed and just slowed the rate way down. He did ok overnight, but they never were able to wean his oxygen level down much so he's at 3 liters. 

They got a chest X-ray this morning, which is still pretty full of interstitial edema, some patchy infiltrates and a pleural effusion.  This is today's film:

And this is last week's film:

Not a great pic with the glare, but you can see how much more washed out today's film is. That and the flat angle on his left. (My X-ray peeps will understand that!). It leads you to believe he's holding  some fluid, as it should be really pointy like on the film below. 

So, the plan for today is to start the IPPB treatments back up-4 times a day. Try to wean his oxygen down as he can tolerate but not make his work of breathing any worse, so if we have to stay at 3 liters then we do. 

They also want us to go to the Asthma Class tomorrow, as this RSV can continue to cause him some longer term respiratory issues and they want us to be very familiar with his asthma action plan. 

Dr Mann is the attending on this week and weekend, and we think he's fabulous and trust his instincts with the bald kid. But it looks like we won't be going home before next week.  And even then, he may need some supplemental oxygen. 

Slow and steady. 

Slow. And. Steady.  

Moving on up: Wednesday.

We are still hanging out in the PICU-but someone is obviously just fine with that. 

There are no open rooms upstairs so the move will probably be tomorrow morning.

Today was a very uneventful day; which we like. A lot. 

However uneventful = long. And mom and dad are tired.  But seeing him so much better is worth the loss of sleep. 

He was advanced to full feeds today-and got one full Pediasure bolus feed, and did fabulous with it. We are having a little issue with some increased stooling still, but all his stool tests for protein and fat loss have been negative. I'm sure it's the nasty Rocephin and Augmentin antibiotics he's getting for the pneumonia he doesn't have. ;)

They switched him over to regular nasal cannula early this morning and it was supposed to be at 3 liters, but the oxygen regulator in his room goes from 2 to 6, so 2 it is!  And at 2 he's sitting pretty at anywhere from 92-96 on his sat.

We are going on one of his longer hospital admissions, as tomorrow will be 9 days. His stays for his open hearts weren't even this long!   But we will stay as long as we need to in order for him to be back at baseline before we take him back home. 

And aside from a couple of doofus residents, he has had some of the best care we have ever experienced at The Mercy. Thank you to all of our Nurses, RT's, Rad Techs, Care Assistants, Residents, Medical Students,  Attending Staff,  housekeeping to cafeteria to Security,  It takes a finely tuned machine to make a peds hospital work; addressing the needs of the patient and the parents, all while trying to keep everyone happy; and this place makes it look easy. 

Going to try to get some sleep now. If only I could sleep this soundly:

Finally! Some sleep!!

Our little bald pumpkin is resting nicely, the most comfortable I've seen in a week.   He got 5 good hours of sleep last night-really good sleep. So good and so deep in fact that he dropped his heart rate down to 32-33 for a while. He's still only hanging at 41. Which freaks everyone out, as policy in the PICU is to start chest compressions below 60. 

His bipap was turned down to 25% this morning, but he's dropping to the low 80's so he's been bumped back up to 38% and he's hanging steady at 97.  Once he's a little more awake they want to try him on the high flow oxygen cannula again. But since he's finally sleeping again, they don't want to mess with him.  It would be like poking a sleeping bear-not worth it!  

He was getting some Pediasure last night, at 10ml/hour. But he began having increased stooling (11 poopy diapers yesterday total) so they stopped the formula around midnight and switched him over to Pedialyte this morning.

They are also concerned he could be having a protein absorption problem, so they are going to order some additional lab work to determine. They will also be collecting a stool sample to help with that potential diagnosis. 

He has also been receiving Rocephin antibiotic, and that could easily be contributing to the increase in stool output also. 

His CRP came way down this morning-from 23 to a .8!  Woo-hoo!  It had jumped up that fast initially; from a 1.5 to a 24.1 in 24 hours so that is why they were searching for a source of Inflammation by doing the pelvis/hip/knee films. But it is a bit of a misleading lab value, because it can also just signify an illness, and in this case-that looks to be exactly what it was. They said they are seeing a lot of RSV kids here in the PICU that have the same type of crp response. 

Unfortunately, they are also seeing this strain of RSV last 2-4 weeks for full recovery. That may mean that in order for us to get home with the bald kid some oxygen may be going home with us. Ahem. Not what I wanted, as I always feel like once we start something like that as a temporary fix, it becomes way too permanent. But this virus has really kicked his skinny little butt, and if it's what we have to do to get and keep him home and safe, we will do it. 

I got a peek at his chest X-ray from this morning and wow, it's no wonder he's getting an increase in his lasix now. They just increased it up to every 6 hours instead of every 8.

 It looks terrible. Full of fluid and patchy infiltrates. I think the official diagnosis was 

'Increased interstitial edema'. Ya, no joke. When I can recognize it-it's bad. 

We are still waiting on Vascular Access to get up here and get his subQ immunoglobulin done per Allergy's recommendations from yesterday. It seems it's a bigger deal than it really should be. Why am I not surprised?  

So the plan today is continue to hold steady with him. No big changes, just keep trying to wean down the bipap and get him switched over to the high flow. 

Get his gut moving in the right direction. 

And hope he doesn't decide to throw any monkey wrenches in the process. 

Isn't he the sweetest?

Bit of a setback...

We've had a little setback with the bald kid. 

He was working too hard to breathe on the high flow oxygen cannula. Even though his sats were staying in the high 90's, he wasn't comfortable. 

So....back on bipap he went.  And it was obvious how much more comfortable he is on the bipap because his heart rate immediately dropped to the low 40's once it was on. 

And my little insomniac has only had 2 hours of sleep since Friday. Not for lack of trying. Or lack of medicating. 

Something is wrong and something is hurting him. He whimpers and cries. And his crp-inflammatory marker-jumped significantly overnight. Now we are playing 'search and destroy' to find the culprit. 

Chest X-ray, abdomen xray, blood cultures, urine culture, and pelvis, hip and knee films looking for an angry joint. 

His chest X-ray is showing patchy infiltrates and still looks very wet. 

They are giving him 3x his home dose of Lasix to get the fluid off. Fortunately his belly film does not show an obstruction, so they are starting some food back up at 10ml/hour. Really, really, slow. Which is really, really good. 

He also has hyponatremia-or his sodium concentration is too low in his blood. This can cause all kinds of problems and they are working to correct those. 

They also consulted with Allergy/Immunology and guess what? Momma's not so crazy after all. He will be getting an IVIG infusion of his immunoglobulin today AND his home subQ infusion tomorrow and another one next Saturday. Hmmmm...I will take an 'I told you so' on that one. Actually I don't care, I just don't want him any worse so let's get this done! 

They are giving him a couple more hours on the bipap before they reconvene and consider other options. They are talking like Pulmonology is probably going to have to get involved at that point. 

Pray for decreased work of breathing, and some sleep for our little guy.  He's pretty miserable right now. 

Slow and Steady

After I posted on FB Friday that the PICU doc wanted to try Ethan on some hi-flow oxygen again later, they decided not to. He hadn't been resting very well, and his heart rate was still up.   I left Brian and my Dad and Teresa with him and went to work at 7pm.  By the time I pulled in the garage at the hospital Brian was texting me telling me Ethan had spiked another temp. They got him some Tylenol quickly and felt it was still this darn RSV causing it. But when I talked to his nurse again at 2:30am he had spiked another temp so they did a chest X-ray. This one now looks like he may have more of a consolidation in his right lower lobe of his lung and some fluid on his lungs. They wouldn't come right out and say "pneumonia" or "pulmonary edema". But they did increase his Lasix, start him on an antibiotic, and draw more blood cultures.  

Saturday I slept at home due to the fact that my work 'week' started at 7pm that night. Hailey and Brian went to spend the day with him.  It seems they were able to get him down to 30% on the Bipap and decided to switch him over to the High Flow Nasal Cannula Oxygen at 11 liters. This is a humidified, special type of nasal cannula, as you can't shoot 11 liters of o's downs a regular cannula. 

And as long as he's on this type of oxygen, he stays in the PICU. He's got to get back to regular nasal cannula oxygen or room air before they boot us out of PICU Suite 16. 

You can see its fancy schmancy specialized coiled wires:

And he's done so great on it-I think the Bipap mask is gone for good!  That sure made him happy. 

So they tried to feed him a little, 100ml over two hours, and he didn't like it too well, so they decided to hold off on any more feeds tonight. It also appears he's got some elevated inflammatory markers-CRP and Sed Rate, which would not be surprising with the stress his body is under right now. 

He still doesn't seem to be resting very well, so he's received some Ativan, and last night it helped him get some sleep-tonight-not so much.  They got an X-ray of his belly, which showed he needed to poop-which he promptly did for his nurse. And they are planning to get another one in the morning to see if he has developed a little ileus or obstruction. 

I'm more than a little upset he didn't get his immunoglobulin infusion today.  Especially since I've told them since Tuesday he gets it on Saturdays.  The Vascular Access team has to administer it and guess what?  Yep, you guessed it. They don't work weekends. So the brilliant plan was to just do it Monday. Except we were always told you can't miss the original date by more than one day-or you just have to forgoe that week's dose. And since he didn't get it Friday, and the Vasculat Team won't be in until Monday....yep, that's more than a day. And more than I'm comfortable with. Especially since I sent all his meds and supplies down today to do the infusion and they won't let me do it. I'm ok to do it every single week in our home without the watchful eye of a doctor, but not in the hospital. I may not have RN after my name, but I do have MOM. And I think that should qualify. Besides, last time the Vascular Access team did it, they only had short needles, so we had to ridiculously tape them down to hold them in his stomach, and they still leaked. AND I had to show them how to prime and work the pump. I know it's just because they don't get a lot of experience doing it-again, all the more reason they should just let me do it.  They know I'm not happy and planned to call Allergy/Immunology to find out what their recommendations are. But I can ensure you, if he doesn't get that dose Sunday I'm going to be even more angry. 

On an awesome note, I got a phone call from E's amazingly sweet pediatrician Dr Russell yesterday!  She called and left a message and left me her personal cell number to call her back. One of her residents had let her know E had been admitted and when she found out he was transferred to the PICU she was very concerned. Wanted to make sure we got an echo, and to make absolutely sure I was letting them know that I know him best (of course I am-she knows me well) and if I had any trouble, questions or concerns to call her. She wants me to keep her updated on his status and finally just wanted to see how I was doing. Caregivers often get overlooked and she made my day when she told me to "hang in there". "You're doing a fantastic job-always do!"  She knew I needed that. 

It's funny, Ethan's had RSV before, he's been in the PICU before. He's fought like hell for years with illnesses and two failed pulmonary valves and surgeries to fix those. And we thought we had run out of luck and time with him in 2013. But as I was standing in his room on 6 Henson, watching him tank and having the Rapid Repsonse team called and his room fill with dozens of people it hit me hard. I started crying. And I don't cry. I mean I DON'T CRY IN SITUATIONS LIKE THAT.  I'm strong, I keep my emotions in check and get shit done. Get him well. Get him where he needs to be. Nod and smile and answer their questions. I'm not the crying mom. That night, I was that mom. And it was surreal. 

I've always said Ethan would beat the big stuff and in the end we would lose him to some crappy respiratory virus, and at that moment, I felt like it could be happening. 

But he's not done fighting yet, so keep him in your prayers he kicks this thing, cause it's really stressing me out!  

Gonna spend some time with the bald kid when I get off work at 0700 and try to get him to sleep and see what the plan is for Sunday.  Will update when I know more. 

And good luck to Hailey Jayne and Pride VB as they play today in Gardner Kansas!  Bring us back a medal!!

What a day.

I am about as emotionally drained as I am physically drained. 

And my poor, sweet boy is the one going through all this. 

At this point, all the issues he's having are purely the nasty side effects of RSV.  My concern about his BNP possibly pointing to heart failure were put to ease today when Dr Carlson with Cardiology came by. His echo looks as great as his last one in August. Mild leakage of his Melody Valve-which is new, but no problem. Otherwise right heart function is fantastic. The BNP  drawn on Tuesday that is 388 is not the same BNP test that was done in May 2013 when it was 422 and he was in failure. The 422, and all the others before that were 'send out labs' that went to Truman to be ran called a BNP.   The test done on Ethan's blood Tuesday is a NEW test that Mercy has decided will be their new standard for measuring heart failure. It's called the NT-proBNP and is done in-house. And it's ranges are different. Way different. As Dr Carlson explained; the 388 from the NT-proBNP is like the 38 Ethan had when not in failure a few years ago. A typical number of a kid in failure would be in the tens of thousands with this test-so his 422 would equate to about 40,000.  Clear as mud right?  Like comparing apples to oranges. And if the jackhole resident who argued with me about Lasix last night would have just explained that, I wouldn't have had to get all crazy heart mom on everybody. 

I finally left to go home Weds night about 2:30am because I had an appointment at KU at 9am on Thursday. My sister Kate went to stay with Ethan this morning until I could get there. Well, I never made it to KU, he started going downhill first thing this morning. Fever spiked, heart rate went up, sats went down.  Team ordered another chest X-ray-unchanged from previous and decided to stop all fluids going in-IV and feeds. They also decided to start him on some IPPB-or Intermittent Positive Pressure Breathing. It's like C-Pap for kids. It is used to forcefully push air into the smallest air spaces in the lungs in the hopes of popping them open-whereas the RSV causes them to be really closed off. He was to do 20 min every 4 hours. He did well with the first set, then rested nicely and actually we both napped for a few hours.  Then he did his second 20 min, and did ok through most of it. Got a little fussy at the end. 

At about 5pm all craziness broke loose. Ethan spiked a temp of 100. (He only runs about 96.4 because of his immune deficiency-so 100 is like 104 to us). And he got a little mottled in his feet and hands and had an increased work of breathing that was visible in his abdomen and neck area. Team came up to see him within minutes and decided to give Tylenol, start some fluids to combat the temp and try some nasal suctioning.  Team left. Within 15 minutes Ethan began retching like he was going to throw up, temp spiked even higher to 103 and his sats wouldn't come over 83 on 15 liters of oxygen by non re-breather face mask.  Nurse Jessica called the Team, called the Charge nurse, called Respiatory Therapy and shit got real. Real quick. Ethan became really lethargic and slow to respond, aside from being slow to recover with the increased oxygen. A decision was made to call the Rapid Response Team to get an attending Dr and ICU nurses present. Shit got even more real.  

That is the most calm panic I have seen surround my boy in a long time. 

It kinda makes you weak in the knees as a parent. 

He was then put on bi-pap and moved to the PICU.  And here we are. 

Bi-pap is BiLevel Positive Airway Pressure-which is what CPAP is.  At 70% Ethan is being forcefully given 70% oxygen. The normal air we breathe-room air-is about 21%. So he needs that much more to keep his oxygen level at 90 or above.  They will try to wean down to 30% tonight, and if he can go down to 30% and keep his sats at 90, we will switch to a nasal cannula. Unfortunately Ethan has thrown up in his mask twice and we've only been able to get down to 61%. And without the bi pap at all, he just simply has no oxygen reserve left and his sats dropped to 73. 

We also got another chest X-ray, and this one now shows some right lower lobe funkiness consistent with RSV.  He had also had a few really stinky, loose stools so he is being checked for c-diff if we can get enough to send for culture.  

It has been one heck of a day, and Ethan once again has proved our age old motto about him;

"Ethan is fine. Until he's not."

Right now, he's not. 

Thanks for all the prayers and offers of help. He's in the best place he can be right now in the PICU, and like I always say "it's not what you know, it's WHO you know" and knowing three of the PICU nurses working  tonight got us the bombdiggity PICU suite complete with its very own bathroom and couch bed. Now to try and get some zzzzz's on that awesome thing!  Nevermind. Now he's throwing PVC's because it's just not gotten exciting enough for him yet. 

If I had a dollar every time a Doctor said that to me....

"I just don't believe that would happen"

"It's just not typical"

"Kids don't just go into failure like this"

"So highly unlikely..."

And my all-time condescending favorite;

"I can appreciate that you know him best Mom, but....."

Rewind to Monday:

Ethan is ok. Just ok. Not fantastic. Not terrible. Just ok. 

Spent most of the day being held, or in his bed listening to his music because he was tired of being held.  Then Brian text me at 8pm- he has a fever of 99.9 and has the chills so bad he's violently shaking almost seizure-like.  Dose of Tylenol and plans for a trip to the ER Tuesday morning. 

By the time we get him to the ER, he still has a fever of 101.2 after two doses of Tylenol, oxygen sat is 86-88, still has the chills and now coughing. NOW he's terrible. 

ER Resident comes in and does the same old song and dance of let's do some tests and see what we find. I expect IV start, labs, blood cultures, chest X-ray, flu swab and virus panel. 

We get a chest X-ray, a flu swab and a dose of Tylenol. Both X-ray and Flu are negative. 

So we sit. And sit. And sit. And sit. And Ethan's heart rate is in the 110-130 range. Yep, the kid who is notoriously known for LOW heart rates.  His BP is 128/56, his sats are hanging in the high 80's-they never felt the need to put him on any oxygen, and now temp is 103.7. 

I had a little mini meltdown and his ER Nurse agreed she felt we were missing something. 

She talked them into putting him on some o's and with that they decided to admit him. 

She also asked for some fluids and viral panel, bloodwork and cultures.  To which she got s big fat NO from the ER. So she paged the Purple Team he was being admitted under and they ordered all that  the ER wouldn't.

Thank goodness for Nicole J and her advocating for our sweet bald kid. By the time we got to the floor we knew he had RSV. Which is a nasty virus. And it gets worse before it gets better. 

The Purple Team docs visited with us yesterday afternoon and didn't treat me like the crazy mom we all know I am as I pointed out E's puffy feet, hands, and face.  With his history and Dr Shubert's familiarity with E (having taken care of him before) she agreed an echo and BNP were warranted. 

BNP is a blood test that indicates congestive heart failure. Less than 100 means no failure. Ethan's is 388. Which according to the night resident is no big deal since he had a normal echo. 

Hmmmm, I vaguely remember being told something similar in 2013 as Cardiology booted us out the door convinced his heart was ok. And with a re-admission 3 days later and a BNP of 422 they changed their tune. A mere 34 points higher than it is now and he was considered in failure.

I saved my been there, done that speech for an attending today. 

In talking to Dr Sweeney today-the Purple Team attending, I repeated our two previous incidents of failure and what led up to them with him.  He agreed a Cardio consult could be warranted and will ask them to weigh in tomorrow. He also recommended running a BNP when E doesn't have a viral illness to see if the results will be different. I don't know enough about the BNP being affected by a viral illness other than when he had Coronavirus before, his BNP was only 39 so I'm guessing it won't make a difference and we are heading towards failure again. But who am I???

Ethan had a pretty good day. Until about 5pm.  His heart rate had come down to the 80's-90's, he was only on1/2 liter of oxygen and keeping his sats at 93. He even tolerated half a feed. Then he went downhill from there. Puffier feet, hands and face, coughing, really wet sounding lungs, heart rate climbed back up to 110's.  His day nurse was sharp and called the team.  Night resident showed up and ordered a chest X-ray-unchanged from yesterday. And tried to fight me on giving him a dose of Lasix to help with the fluid. I won. But he tried to force more fluid and a full feed on him to prevent electrolyte imbalance and I nixed that shit too. He's getting a 1/2 feed I gave in to and now he's on 3 liters of oxygen to stay above 91. 

We seem to be moving a tad backwards here and it's frustrating. And if one more Resident tells me they are the doctor and though they appreciate my position, their years of experience tell them they know what is better for him, I'm going to need bail money.  

Appreciate my position? I'm his Mom jackhole. And far better versed in all things bald kid than you. 

Your years of experience?  You're like 28 with no kids, let alone one like this one. And you were probably still in high school when the bald kid was born. 

I may only be his Mom, but I've done this a few times before.  And I'm getting out in front of it this time. 

So work with me, or move out of my way. Cause I've kept my crazy in check for far too long.  

Gotta go, now he's trying to vomit.