Saturday afternoon he was working pretty hard to breathe, doing the pant-forced expiration breathing thing. And it got considerably worse after he ate. When our home sat monitor showed sats in the low 80's. I was pretty sure they were right. While debating the drive downtown he took a turn for the worse and got really pale with blue/purple lips. Thus he was taken by ambulance-thank you KCFD station at 111th and N Oak for all your help! And John and Stephanie-the crew that transported him-you rock! John got an IV in the bald kid with one stick while bumping along the road!!
Awesome ER Resident Dr Underkoffer and attending Dr Jen Watts-who knows E pretty well-did the work-up. Chest X-ray, labs, blood cultures.
Chest X-ray showed 'significant fluid on his lungs' or pulmonary edema. They consulted with Cardiology and gave him a dose of IV Lasix in the ER while getting his room ready on 4 Sutherland.
He went back on Blue Team-Cardiology Service, and the same team that sent us home on Tuesday was the one re-admitting us.
One resident-Dr Miller visited us in the ER.
Supervising Resident Dr Fischer met us on the floor
And the resident who was condescending to me last week -Dr Wood-came in later. We are on better terms now. Because now I get to be the one that without actually having to say it-said 'I told you so' with my expression. She got me. We're friends now, so much better friends that when I asked for a BNP (Brain Naturetic Peptide) to be drawn-the test that indicates heart failure-she agreed we needed it.
It got drawn and sent to Truman last night.
And, wait for it......
It was 422.
Normal is <100.
His last one in October was 39.
Hmmmm, heart failure??
The team rounded just a little bit ago. Dr Swanson had him last week and is still on.
Now that we are back with pulmonary edema and increased oxygen needs, she admitted they can't use the rhinovirus/enterovirus as an excuse anymore.
But what is it?
She's not willing yet to admit that he's in failure and that he can't tolerate "significant, severe pulmonary regurgitation, as most kids tolerate it for years-up to a decade even".
Well, in case you haven't noticed, our bald guy doesn't quite fall in the category as "most kids".
She's ordered another echo for today to see if there has been a change from 6 days ago. But it may not happen if they can't get a tech in here today.
We discussed that replacing a pulmonary valve less than two years old is typically unheard of, and I understand that and the last thing I want is for him to have to have another open heart if there are other options. She mentioned the Melody Valve and I told her we had talked with Dr Kaine about it. But due to his size he may not quite yet be a candidate for it.
So I threw it out there-we were going to be talking to Dr Kaine about other options and one of those being a second opinion at either Boston or CHoP.
That his quality of life during the 6 months he was in failure prior to absolutely having to replace the valve was so poor, that we weren't willing to sit and wait for that to happen again. Not if there are other options. I told her I knew Boston has a Heart Valve Program that focuses on valve repair vs replacement and if that could possibly be an option, we want to explore it.
She seemed very amenable, but did tell me she is hoping to find another reason, any other reason that he's got pulmonary edema and oxygen needs other than congestive heart failure. I told her I would hug her if she did!
He's here until at least Tuesday in the hopes the Lasix will get enough fluid off his lungs he can come off O's. He may be going home on Lasix again, and I again asked about home oxygen if that prevents us from having hospitalizations just for oxygen support. She relented that would possibly be an option too.
She's going to consult with Immunology today about checking his IgG to see if he's low and may need an IVIG dose while here.
She is going to consult with Dr Kaine, so I'm sure after the holiday weekend we will see him stop by here.
And I think now they believe this crazy Mom.
Who really does know this bald guy.
Oh my gosh, how scary for all of you!! Mama really does know best. Thinking of you all!
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