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?