So this is where we are at. I will try to make it brief as we are all running on fumes and trying to make sense of it all. Here's the rundown:
1. Quinn admitted with pleural effusion and potential pneumonia on Tuesday afternoon.
2. Admitted again to 15th floor
3. Pain has been out of control so they are doing their best to get that under wraps.
4. Finally Dr. Fraser knows we are here and we met with him this morning (Thursday) --- he thinks she is partially suffereing from PPS - which is basically an inflammation around the heart that can cause flu-like symptoms, irritability, being uncomfortable, not eating, the works. Started back on Toradal for inflammation and also Prevacid to counteract any potential gastritis issues.
5. Met with cardiology team - this is the scary part. They will re-echo her tomorrow (Friday morning). There's no doubt from her echo today that the patch used to close up the VSD in her PA is leaking. We just don't know to what extent. Worst case, they have to re open and repair that. Another open heart. Best case, it can be a little leaky if they aren't connecting it to any of her other symptoms.Good news: Pleural effusion is mostly clear so the diuretics are doing their job there
6. She started on IV fluids this afternoon - she is already starting to perk up from that. When she was home she was guzzling milk like a cow and that has stopped at the hospital. Today she had less than one ounce by mid afternoon so they went ahead and started her on the IV. Not optimal for sure but at least we are making sure she is getting some energy from being hydrated.
Next step of action: we have another echo tomorrow & will hear the results with that. We will continue with current course of meds. We won't know anything until mid to late afternoon on thoughts of the echo.
(I am leaving a lot out, as it is somewhat still cloudy in my mind - and I am still processing. Matt and I are hanging in as best as can be expected and our main focus,of course. is on our children. We are fortunate enough to have my brother and his wife, Christina, with us right now keeping the house at a sane level and allowing us periods of sleep.)
As you can imagine, after having such a great surgery success and coming home - this past few weeks has all been a bit of a tailspin. Thank you for your prayers. We will continue to keep you posted. Thank you so much for loving on our sweet little girl.