Day 8 update mace, Mitrofanoff & bladder augmentation

I first would like to thank everyone that prayed for him this past week. They are felt and sustain us.  Today is Monday. We have had a dramatic weekend. However, I am glad to report that Monday has started off excellent.  Hayden has removed one of his kidney drainage tubes that was stitched to his new bladder.  This was pretty painful to remove and I had to try and not faint. Even with that, about 30 minutes later, he was able to turn over on his side independently with the visit of Ariel.  To be able to use his abdominal muscles is a big deal after the extensive surgery he's been through.

Hanna has been keeping us company in this stay while Scott and Garrett are home.  One is trying to work while the other is trying to play.

Saturday was particularly hard.  Everything has been going along smoothly and better than expected when Saturday evening, Hayden had two seizures, frequent daily low-grade fever's, and an infection on one of his drainage sites.  This was completely unexpected because the morning he looked so good that we even removed his epidural and said goodbye to my mother who had been helping with the kids all week. We thought everything was going better than expected.

Our wonderful urologist made a special trip in to visit again due to the unexpected set back with his health.  He confirmed that it was an infection and ordered blood labs as well as bacterial labs to be drawn on the infection site that takes 48 hours to grow.  His blood cell count all looks normal.  They are applying to topical anti-bacterial creams to his remaining drains and tubes.

Sunday we were all together as a family and just spent it in prayer and rest. The best part was getting to have everyone together for the first time in a week all of us together at the Ronald McDonald house.