Per Cardiology Resident and two nurses:
It's not his heart.
It's a virus.
No need to involve Pulmonology or Immunology.
His sats are acceptable to be at 90, or even high 80's when ill.
It's just a cold.
Brian and I are seeing a pattern with Ethan eerily familiar to the 6 months prior to him being admitted to the ICU for drips for congestive heart failure and a BNP of 3500.
We are seeing a fussy, lethargic, panting child with no other respiratory distress indicators.
We are seeing puffiness of his feet and color changes and mottling up his legs and arms.
We are reminded of the months we took him to his pediatrician saying "he's just not right"
We are back to admissions for minor viruses, causing him considerable drops in his O2 sats.
We are seeing a kid whose hand you can't keep out of his mouth without a brace on it too weak to put it there because he is lying with his arms over his head to help him breathe.
We are envisioning a slow downward spiral of our guy reminiscent of 2011.
We are seeing the big picture. Not sure anyone else is.
We have been told to never take Ethan to Children's Mercy Urgent Care North again by the Medical Director himself, Dr Michael Moran. During the phone call he made to me on Thursday morning, he stated "Ethan's fragile state and deteriorating status can't be handled at the UC"
He is "Outside their scope of practice"
And we are "not to bring him back here if he is sick".
But wait, it's just a virus, a cold. He's not deteriorating. Per Cardiology.
Colds are outside your scope of practice?
You suck as a physician then, and I will never, NEVER set foot in your UC again.
I will be that mom that makes unnecessary visits to the ER for completely non-emergent needs like suctioning, if its after PCC hours. At least I still know a few awesome nurses there. And X-ray Techs!
At our discharge follow-up appt with E's amazing pediatrician Dr Russell Thursday afternoon, I lost it.
I cried, she cried and then we had some serious discussions.
The elephant in the room was addressed; we will outlive Ethan. We've known it for a long time. But in the interim he deserves to continue to have the same quality of life he is accustomed too. And if we don't feel those requests are being honored, or are actually being roadblocked, we need a second opinion. And we need it fast before we travel much further down this road and reach a point we can't turn back from. Sooner than later.
This summer. At one or all three of the best pediatric Heart Care Centers in the country.
University of Michigan
Boston Children's
Or CHoP -Children's Hospital of Philly
Her words. Someone who has cared for E for 5 years. And she sees the big picture.
We need a plan of action. I'm not asking for a crystal ball reading to tell me when he's going to go into failure and how it's all going to come out. I'm asking is there anything else we can do in the meantime to ensure he continues to have the great life he has. And at what point we intervene, and based on what his symptoms are-how do we intervene? Meds? Oxygen? Surgery? And in what order.
If he does this-we do this.
And if he does this-we do that.
Etc.
I don't need a timeframe. I need a "when he does do this we will be prepared plan".
Give us some standards. Make a plan. Cause if we make one-that will inevitably ensure Ethan doesn't follow it! It's when we wing it that he will prove to us he's in charge, and it won't be pretty.
At this point, the sit and watch and wait for him to gain 22lbs to be eligible for the Melody Valve Transfemoral Catheter procedure approach doesn't work for me.
In all fairness, we have not spoken to Dr Kaine, he may not even know yet E had been admitted two days after our Cardiology appt last Wednesday. But I have called clinic and left a message for him to please call me at his convenience.
He may have a plan, I may just need to ask him to clarify what that is.
But if he doesn't, or we have other options out there and I don't know about them and seek them out, I will always wonder if I did enough for him.
It's my right and my responsibility as Ethan's Mom to do this for him. And if any, ANY doctor caring for him can look me in the eyes and tell me they wouldn't do the same thing for their child then it's time we parted ways with that Doctor.
Because we're not giving up on our little bald guy.
We know him best.
And we're not going down without a fight.
So be on our team, or get out of our way.
To my besties who called me, text me, sent FB messages, and the things you said and offered; thank you. I needed it, you knew it, and you were there.
Thanks for being on my guy's team.
I love you.
No comments:
Post a Comment