Peeing

The Kuhl Family had a good day today. Tillie was excited to get back to her normal routine going to daycare with Mary Rose and Cully peed continuously today with his vital signs remaining solidly within his ranges. We are thrilled both of our children had such good days and are starting to feel like we are striking a balance.

We got back into Tillie’s routine this morning, with both of us home for breakfast, and Jess heading out the door before we were on our way to daycare. She was over the moon to get back to daycare and chatted Carl’s ear off on the way, rattling off all of her friend’s names.  When she walked in the door she did not hesitate to join her friends, and jumped right into playing before her dad was even out the door.

We meet at the hospital to talk with the doctors about Cully’s care plan for the day.  His urine output had continued to progress overnight so they were still debating whether or not he needed the PD catheter.  They decided to continue to monitor him, but make some adjustments to his medications and ventilator.  They need to make regular adjustments in an effort to begin weaning him off some of the life saving measures that are keeping him going. 

Everyone was reminded once again that Cully is in charge of his healing process.  He didn’t particularly care for the changes that were made, while his vital signs held in ranges, he nearly stop urinating for about an hour.  The care team then reset his ventilator and medications to earlier levels and surgery to insert the PD catheter surgery was scheduled Tuesday afternoon.  As if on queue, he responded by putting out more than 18cc the next hour. The rest of the day Cully produced an average of 19cc per hour with his high water mark thus far of 25cc. 

Cully reached a big milestone today...his first day in the negative for his fluid input/output ratio! We are cautiously optimistic that he will keep this pace up, allowing the swelling to decrease and putting him on pace to have his chest closed sooner rather than later. 

After an afternoon of monitoring Cully’s progress Jess picked up Tillie. Jess and Tillie met Carl at home and we enjoyed a quite dinner before playing for a bit and putting Tillie bed to dream of meeting her little brother soon.

 

Tillie looking at pictures of her baby brother, Cully.

As of 9 pm this evening, Tillie was fast asleep in her bed, Jess was pumping at home in bed, Carl was watching stats at the hospital and Cully was still peeing!

We can’t say it enough, but thank you all for your support.  It has been incredible to hear words of encouragement from so many family and friends over the last week.  We are a blessed family with an unbelievable support network. Thank you!