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!

Happy One Week Birthday!

Cully is now one week old and 72 hours post surgery.  He continues to be stable and recovering ever so slowly. 

His vitals have remained strong throughout the majority of the last 24 hours. However, there was a pulmonary concern yesterday evening, which was likely caused by his desire to wiggle his hands and feet, along with the swelling caused by his lower than desired urine output. 

The urine output concerns have raised the possibility that he receive a PD catheter, which would assist in output if necessary.  Overnight and throughout today his urine output has increased into the ranges his team care would like.  And, overall his fluid input v. output remains slightly in the positive, we would like it to be negative (more fluid out then in).  However, the ratio has improved each day since surgery. The care team feels it best to continue his current course of treatment and evaluate if the catheter is needed tomorrow morning. 

We continue to try and develop a schedule for Tillie. Tomorrow, she is going to back to daycare and we will spend the day with Cully. One of us will pick Tillie up and we will meet at home for dinner and bed. Since Friday, the three of us have had dinner and a few hours each morning.  We have been splitting time at the hospital with Cully and at home or out and about with Tillie. We want to do our best to be there for both of our children and think that our new schedule should ensure Ms. Tillie stays a happy toddler through Cully's first surgery and Cully is supported through his recovery.

Carl took Tillie to the park this afternoon.

As always, thank you all for your thoughts and prayers! We very much appreciate the outpouring of support we have received and feel the power of all of you each and very minute.

Post Op - Day 3

Cully is now 48 hours post surgery.  He is stable and for Cully stable is very good, this is a marathon for him not a sprint. 

There have been ups and downs over the last 24 hours, nothing major but it’s been a journey getting him to where his care team would like him to be.  At this point the most significant measures for Cully are that his heart function remain steady (which it has consistently since surgery), all of his stats remain in “his” ranges, and most importantly, he begins to pass fluid by urinating.  They control all of these things through different medicines and his ventilator. 

Cully’s Ranges:

•  Heart Rate – 145-165
•  Oxygen Saturation – 65% – 75%
• Blood Pressure – 70 - 85
• Urine Output – Exceed the amount of fluid intake

Yesterday afternoon, Cully was not urinating at the rate they would like. To assist him, his care team started to give him a diuretic that triggered a large release of fluid. While this this fluid release was a step in the right direction, it also triggered a steady downward trend in his stats.  In an effort to get his stats back to where they would like them to be, adjustments were made, including, slightly increasing his fluid input to increase his pressures, restarting the external pacemaker to increase his heart rate, and an adjustment to his ventilator.  They also changed the amount and method of delivery of his diuretic.  

Since the change yesterday, Cully's averages have been within his ranges:

• Heart Rate - 152
• Oxygen Saturation - 72%
• Blood Pressure - 75
• Urine Output - Mid-afternoon it has exceeded the total from yesterday and is nearly pacing his fluid intake

Adjustments are very normal for an infant recovering from major heart surgery.  Each baby is different and requires different levels of every drugs and assistance from each piece of equipment. 

Today, Cully has taken over for the ventilator from time-to-time and breathed on his own! He has continued to open his eyes! The pace maker has been removed! And, best of all, he has stayed well within his ranges with only minor adjustments!

Over the next 24 hours they will continue to watch his fluid out put very closely, if he continues along this trend they could close his chest early next week.

Again thank you all for your thoughts and prayers! We very much appreciate the outpouring of support we have received and feel the power of all of you each and very minute.

Post Op - The Morning After

Cully is about 20 hours post surgery and hanging tough!  The first 12 hours are generally the most critical and he made it through.  There were a few hiccups throughout the night, but things were managed with medicine.

Our home away from home.

Since mid-morning his heart rate, blood pressure and oxygen levels have been steady or gradually increasing which is right on track. 

The past 24 hours and upcoming 48 hours will be very trying. The overachievers in the two of us want to always exceed expectations; however, for Cully it is best that he is in the averages. This means it is best for him to steadily improve over an extended period. Cully’s staff monitors him minute by minute and makes adjustments accordingly each hour. Needless to say this can be exhausting.

Cully's Nurse Friday, Nov. 1, Ingrid, she is exclusively monitoring Cully today.

With all of your love and support, we are doing well and staying strong for Cully. Please continue to keep us in your thoughts and we will do our best to update everyone.

All the time spent in the room paid off at 11:20am when Cully opened his eyes!  He opened and closed his eyes for about 10 minutes while mom and dad stood over him in awe.  He then blinked a few times to let us know that he had this and everything would be ok.

Surgery Day - 5 PM

At 4:30 pm, Dr. Overman recapped the surgery for us.  Cully did great!  All the repairs look good and are structurally sound.  There were minor bleeding issues and some electrical issues with the external pace maker that delayed the completion of surgery.   His blood pressure was a bit low so he is receiving a higher than average dose of medication to regulate the BP.  All and all things look positive.

The next eight hours will be critical for him.  They will be gradually weaning him off the blood pressure meds and closely monitoring him.  

Surgery Day - 4 PM

At 2:45pm Dr. Gremmels, one of the cardiologists, informed us that the work on Cully’s heart was complete.  He would remain in the OR to receive an echocardiogram and allow Dr. Overman to closely monitor the repairs.  Everything is going well, including repairing the connection of his pulmonary veins to the main atrium of his heart! 

Around 3:30, Dr. Rios, Cully’s primary cardiologist, stopped by to let us know that they were preparing to close.  Cully’s blood pressure is a bit on the low side, but nothing abnormal that can’t be controlled with medicine. 

The next 8 hours will be critical. Go Cully!!!

Surgery Day - Noon

Our little strawberry came to the hospital a little after surgery began to spend some time with mom and dad.  It was great to have here her for a few hours. 

Around 11:30 am, Dr. Vezmar, one of the cardiologists let us know the surgery was on track and going very smoothly.  A few more hours and he should be back in his room in the CVCC.

We would like to take this opportunity to thank the wonderful staff of Minneapolis Children’s Hospital, especially the team on CVCC.  The CVCC unit is a group of unbelievably knowledgeable, professional and welcoming people that truly work as a team.  We are remarkably lucky to have a top-notch facility and care team so close to home.  Each step of the way, every member of the team has gone out of their way to explain each procedure thoroughly, and allow us to ask a litany of questions in an effort to make us feel as comfortable as possible.  

This is a truly an extrodinary operation!