Thursday, January 29, 2015

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.  


Wednesday, January 28, 2015

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:







Monday, January 26, 2015

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?




Sunday, January 25, 2015

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!!


Friday, January 23, 2015

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. 






Wednesday, January 21, 2015

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.