"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.
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