Lily is in the PICU. She's okay though. At least that's what the nurse said over the phone 20 minutes ago. If you were to ask me I would say "She's FINE! Sheesh." But you learn that everyone has their own definition of "Fine." Apparently our nurse feels that no kid in the Intensive Care Unit can really be considered "Fine" so she said she was just okay, and then proceeded to tell me she was about to wean her oxygen down a little more. That would even get a "She's GREAT!" out of me. But alas, to each her own.
This morning at 4 am Lily started whining. I tried my best to snooze through it and chalk it up to "neuro-irritability" which I learned about from the Palliative care team yesterday, but Zar was up and more agitated than Lily. Yes, her monitor was also beeping a bit but she was Crying for heaven's sake. Anyway, Zar kept waking me up with his "Why is she so sad!?" and "What can we do!?" So finally after I had sent him downstairs for tylenol and albuterol, I decided I had better have a look.
Lily was indeed irritable, and also pale, and pulling for breath, and gagging a bit. Plus her heart rate was occasionally over 200. We started making ER plans, but then after the tylenol, albuterol and a prayer she seemed better and went to sleep, so I put her in bed with me and went back to sleep.
Today was supposed to be a busy day for us, with physical therapy at 9, synagis and doctor appointment at 1030, and hair appointment at 1230, but none of that happened. Instead, although Lily looked better, her heart rate was still too high for comfort and we decided we had better take her in. A few minutes later she spiked a fever of 102.7 so that just hastened things.
I drove her up, got her checked in, went through 7 IV attempts with her, learned that her urethra goes quite a bit "to the right" and ate a soggy english muffin with fake egg. We got to the PICU quite quickly; the hospital is practically empty or so it seems to me. Anyway, no pneumonia. No urinary tract infection. No RSV or Rhino or anything else on VRP. No more fever. Some extra fluid on the lungs, but after screaming through the IV sticks she seemed to open up those lungs and move air better.
So. We are in the PICU. It's all different. This is good as it's easier to separate Lily's PICU from Charlotte's PICU. This is our first visit back in nearly 2 years. Even the room numbers are different. Bed 19 is no longer bed 19. There is a lot more light. Those famed slushie machines I heard tell of were empty. It is FREEZING. Lily has the same mobile Charlotte had, very familiar and dear and somewhat difficult to hear. She's hungry and on high flow oxygen. I am home with her sisters, hopefully Zar will stay there tonight. We are worried about her heart function due to the lack of infection. Her urine output is down. Some question on g-tube drainage. But did get a very nice cream for her amox rash. Looked better immediately.
Hopefully things will continue to be fine, or at least okay.