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!!