Last week at this time I was sitting in the pre-op area at Duke wearing a red surgical cap that made me look like a cross between Ronald McDonald and little orphan Annie. I knew exactly what I was doing, and I knew that God was with me so I felt quite comfortable. I don't remember falling asleep, and I barely remember waking up. All I know is once I woke up, I was TIRED! I didn't really hurt at all, but I just wanted to sleep the entire night. I was told that Piper was doing well. I didn't finally make it to my room until 9 or 10 pm. I knew my daughter had a new kidney and it started working right away! I was happy.
Then, I started hurting; but not in the surgical area. I got a migraine! Ugh... I had a migraine that lasted from the wee hours of Tuesday morning through Wednesday morning. I actually felt a little better Tuesday afternoon so I asked my nurse to take me to see my daughter. She did. She wheeled me up to the PICU and I got to visit with Piper for about 5 minutes. After our visit, my headache came back. I felt better the next morning, though. I forced myself to eat the "hospital applesauce", which is terrible. I drank as much water and juice as I could, and the doctors were happy. They sent me home Wednesday around lunchtime. I had to stop and see Piper (and Brian) before I left, though.
Every day since, we've gotten up as soon as we could to go visit. I've been trying to take it easy as I have quite a bit of healing to do. My neck has been out of place and causing me great pain this week and I get very tired quick. I can't lift anything over 5 lbs., and I can't drive. After a week of healing, though, I am feeling pretty good.
Piper was moved out of the PICU on Halloween. She was moved to the step down unit. She didn't want to dress up for Halloween, but her PT nurse came and put her in a wheelchair, and Brian was able to take her Trick or Treating at Duke. She got lots of great toys, and I'm sure it was good for her to get out of the room. The next day she was moved to another room on "the floor". She's been there every since. She's making improvements every day. She is now walking and talking quite well. She wanted to play some games and play with her doll. She has to start eating and drinking well, though. It is possible she could come home any day now as long as she starts eating/drinking enough. She told me that when she comes home she doesn't want "her machine" in her room. My sister helped to pack up the dialysis machine last night, so it is out of sight and out of her room!
She has a long list of "all new" meds. Brian has been doing an amazing job at the hospital making sure she's comfortable and managing all of her new needs. He is going to have to educate me this time when she comes home. She will stay on some of the meds for the rest of her life, but some only for a set period of time. The most important part, though, is that my her new kidney is working great!
We are so grateful for the continued prayers and support as we continue on Piper's journey. She is a tough kid. (I'm not allowed to call her a baby anymore. She gets mad.) We know that God has been with us since day one, and He is using her in ways we could never even understand. Hopefully I'll be able to post soon about Piper's homecoming!
I am not a medical professional. I do not have any medical training. I am the mother of a little girl who has been diagnosed with Aniridia, Wilms Tumor, and Kidney Failure. I am writing about my experiences. I am not always going to be accurate with details, but I try to be as accurate as possible. Please do not use this information to diagnose or treat yourself or anyone else. Please consult with a trained medical professional for any treatment or diagnosis.