Yesterday Maddi had her repair surgery…the first of two surgeries.
We headed out to Dell Children’s Medical Center in Austin at 5:15am for her 8 hour surgery.
I actually got to talk with both the pediatric surgeon and the urology surgeon, in the same room, at the same time.
They explained the procedure again and spent time with me until all my questions were answered.
They took her back at 7:15am. I received calls from the OR throughout the day, but the urologist didn’t come out to meet with me until 4:30pm. His part was done, but the surgeon was still working on the colon repair part so I didn’t get to talk to him for another hour.
They both felt that the surgery went well and that it went the best it could (they were both very pleased with the outcome).
She spiked a fever in recovery and started to get really upset so they had to give her a few more meds, but we finally made it to a room about 7:30pm (she got the last room in the entire hospital because the flu is so bad this year).
She really just rested and was in and out of sleep all night. Of course there were lots of people in and out of the room too, but she seemed to have a good night.
This morning she was allowed to have some water and juice around 10am and that really helped….except that by the evening all the apple juice had the expected consequences on her GI track! Oh well…
The surgeon came in this morning and we talked more about post-surgical care.
My friend Marci came and brought coffee and breakfast and then Nora came and brought lunch. Now I’m starving because I’m on my own for dinner!
Maddi seemed pretty restless today. We did get her out of bed and she kind of laid on me for a couple of hours. I was afraid to move because every time I did, it seemed to cause her pain, but my butt fell asleep…and then my right leg so I just had to ask the nurse to help me get her back in.
Then the urologist came in and chatted with me for a while. He said he has 3 cases right now that he’s following of little girls with about the same condition as Maddi…but Maddi probably has the best outcome of the three.
Then he broke the news that she’ll need to have the catheter for 2-4 weeks! Uggh! And the surgeon says we start the next portion of therapy for her colon (you DON”T want to know what that is) in 2-4 weeks. Then we’ll be back for the colostomy closure surgery (another week in the hospital) in about 8 weeks! It’s going to be a rough few months!
This evening she got to have some of her favorite…Goldfish and that seemed to cheer her up. Tomorrow we’ll try some eggs for breakfast and they will try to wean her off of the epidural.
Once she’s taking pain meds by mouth and no fever (which it’s gone tonight), then she’ll be able to go home…hopefully by Sunday or Monday.
OK…she’s quiet so I’m off to find food!
