We got to our room around 4pm. Yes, I said 4pm..... and our nurse was a nurse that used to come fill in years ago as our home health care nurse. It was so good to see a familiar face and I knew we were in great hands. The hospital had built a whole new tower and Lily was the second patient in this room. It was quite beautiful for a hospital and although it wasn't exactly a staycation, it didn't feel like prison either. The nurses were all incredible and I will say it again, pediatric nurses are like no others. They have hearts bigger than the body that stores them and I am grateful to Phoenix Children's Hospital for staffing the best!
Lily was up off and on and was drinking and ate some but when I asked for pain meds I didn't realize we couldn't do it through the iv anymore and it didn't go well. Lily spit it out everywhere and we had a difficult night that night. In the AM she was drinking enough and wetting enough to go home and we were home by 10am. I got her meds at our pharmacy (Target, where every time I go there with Oli just to shop he points to the pharmacy and says "LolyNanna!" that's sad) and asked them to flavor the pain med as much as they could and it has helped some. I also have to be a big jerk and plug her nose and blow in her face to make her swallow. It's awful :( but when I let her go longer than 5 hours she is so sad it is too much to bear so I choose being a jerk over watching her suffer.
Yesterday wasn't so bad she drank pedisures all day long, ate applesauce, pudding, naked juice, and yogurts and she seemed to be in a decent mood.
Wednesday Andrew had to head up north to work on a house and I scheduled the surgery fully aware of him going out of town, so I had Lily's new caregiver come Thursday so I could take Andi to gymnastics and had her come today so I could get some errands ran. Plus I think Lily wanted me to leave with her brother and sister. They are so loud.
Today Lily woke up with some really dark circles all around her eyes. They almost look bruised. She has been a lot more mellow today and while she's been sleepy anyway, even more so it has seemed. This AM I got a call from my friend Nancy who said go online to Texas Roadhouse and look at their menu and let her know the order for our family and she'll bring it over for dinner! Her hubby is the head honcho at the one by us and that place is yummy! It was such a blessing since Andrew is gone to have dinner brought to us. Nancy, who watches Oliver 2 days a week, knows that Lily lives and breathes for a loaded sweet potato from there and that is what she brought her. I was excited to have Lily eat with us tonight because she hasn't since Monday, but when I put her in her chair and gave her a drink she just started crying, and this is the saddest cry she has ever cried. I put her back on the floor, gave her another dose of pain meds, it had only been 4 hours, I wanted her to go longer, but apparently she still needs it around the clock. After 30 minutes I sat her up and she ate the whole darn thing! But while we were waiting for the meds to kick in I was eating with the other two, but Andi said she'd rather lay down with Lily than eat. So I ate with Oliver while the girls held hands and listened to Jewel Twinkle Twinkle. It was the most precious moment. I just love the love that is shared between these two girls. I often will get bogged down thinking what their relationship *could* be, but then I see moments like this and it takes my breath away and I know their relationship is exactly as it *should* be.
Daddy comes home tomorrow and I'm really looking forward to having him back. He has been very missed. Very. Thank goodness for Skype! I'm like a walking ad this blog.... it's a real shock with my quality of writing I am not sponsored.
So from what I heard we should plan on the next several days to be more of the same. All in all she is being an incredible trooper. I know I would be crying in my room demanding silence. I would never get it, but I would certainly complain louder than my sweet girl.
The other two are down for the count and it's only 8:30pm! It's time for Lily's night dose and for my dose of wine (barefoot riesling cheapest one at target cha-ching ;))