Lilly has done well today. She has been awake for most of the day and very responsive to our voices. She is still intubated but is mostly breathing on her own. The doctor said they'll leave the breathing tube in her for another day or two, just to give her body a rest from working hard so she can keep fighting off the virus. They don't know exactly what she has. But several doctors have said that Lilly is just so medically fragile (because of her heart) that any little thing can set her off.
I don't think I've ever been around anyone intubated before. It is strange. Lilly can't make any noise and when she cries she is silent. (I told her perhaps I could just cry for her - it makes me so sad to see her face crumple but no sound come out of her mouth.) Thankfully it's not happening much.
We had a visit from Ann Barnes today, the author of the Trisomy 18 carebook that I have posted farther down, along the right column of this blog. We've emailed and talked on the phone, but it was nice to meet in person. Ann had a daughter named Megan who had Trisomy 18 and lived to be almost 20 years old! It was wonderful hearing her talk about Megan.
I've been on an adrenaline rush today, just so happy that Lilly is still here and doing better. Her monitor alarm went off once this afternoon (due to malfunction) but I felt a panic as I jumped to look at it. Whew!
"The LORD is near to all who call upon him, to all who call upon him in truth. He fulfills the desires of those who fear him; he hears their cry and saves them." - Psalm 145
Wow. All i can say. Xxoo
ReplyDeleteMaybe you (nore i) can hear Lilys voice at the moment because of those tubes, but as you say: He hears their cry and saves them.
ReplyDeleteI will pray you don´t have to wait so long till you can hear Lilly again.
Best wishes and hug to you all.