The Puddles

Today was a little dramatic and crazy. Our heroes of the day are definitely Renna Lange (cardiac nurse practitioner) and Dr. Amy Simms (attending cardiologist).  Ben and I agree that they are our new favorite people. 

Ben’s testing went smoothly this morning. It was an early morning (and a late night before) but we were dressed and ready for the tests by 7:30. Around noon, Ms. Lange came in and said that all the reports had come back except the CT of the sternum and that everything looked great. She said that as long as that final report came back normal than they would recommend oral antibiotics for 7 days and a few more days in the hospital with an end day of hopefully Sunday. Yeah!!! She said they were going to speak to infectious disease and work really hard to convince them of the plan but she wasn’t sure what their recommended plan would be. 

The final CT report came in this afternoon and the cardiology team came to give us the report. Ben was asleep so we stepped outside. Dr. Simms said that all of the tests were normal. She said that they would procede with the previous recommendation and as long as Ben didn’t run a fever on this oral drug we could go home. Yeah again!! When they came in to exam Ben, he was still sound asleep so they quietly listened to Ben’s heart and checked his pulses. When they were done, they covered him back up with the blanket, tucked him in, and smoothed his hair.  It was very sweet. That gesture of motherly love meant the world to me. 

I called Chris and gave him the great news. Ben and I celebrated when he woke up. He was thrilled. 

And then . . . The infectious disease team came in. 

They said that the CT scan of the sinuses and the ultrasound was normal but the CT scan of the sternum showed pockets of fluid buildup around the heart (in the Mediastinum) and aorta. This can be normal in patients who have recently had heart surgery. But that this was the only abnormal finding in all of the tests that were run. So it was possible that there was some bacteria in the fluid that we just can’t identify. She recommended IV antibiotics for three weeks. She would insert a PIC line in for Ben and could go home early next week and finish the treatment. We had stepped outside Ben’s room to talk her, which was good because I was starting to cry. We had gone from one extreme to another. 

And then . . . Dr. Simms walked up.  I had never been so pleased to see anyone. They started talking with Dr. Simms and she stated that she wished they had talked to her first before presenting to mom. It was clear that Dr. Simms was prepared to fight the good fight for her patient. So I told them that I would be happy to go back in the room, shut the door, and let them have a discussion. So discuss they did. The nurse came in our room a couple of times and was able to let us know where they were in the discussions. Finally Dr. Simms walked in, she apologized for everything and then told us they had worked out a plan. He would be put on oral clindamycin. She said that the fluid is not unusual for patients that have just had heart surgery. She was not concerned but was willing to put him on antibiotics to cover him. She also said that they had decided to treat him for postpericardiotomy syndrome. So he will stay in the hospital the next two days to be monitored for changes in his fever and his kidney function (since the treatment for the syndrome is Motrin which is potentially bad on his kidneys). They have cleared the treatment with his renal doctor as long as they monitor his kidney function for two days and it is all ok. The infectious disease doctor also wanted a follow up CT scan but she wasn’t sure about that.   So to be clear, he has to have no fever and good kidney function to go home. If he runs a fever, then we will have to go home on IV meds. That is ok. Ben agreed to talk to his body and kidneys so that they will behave appropriately. I told the doctor that my prayers for no fever worked before so I would pray for that again. We thanked her profusely for standing up for Ben. 

Even Ms. Lange stopped by later on her way home to check on us and told us that when infectious disease told her their plan, she told them that she needed to run it by her attending. Then she heard that they were heading to our room first, so she immediately called Dr. Simms to come and meet with them. Thank goodness for due diligence. 

We are so glad that we are at Texas Children’s so that we have access to so many great and brilliant minds. I appreciate all of the doctors (even the ones who want to put him on IV meds at home) because they are just trying to solve a very difficult puzzle and keep Ben healthy and strong. 

So to be clear to my prayer warriors out there, this is the prayer that we need . . . 

• Prayers of thanksgiving for the doctors and staff at this hospital
• Prayers for no fever in Ben. 
• Prayers of normal kidney function in Ben. 

That will get us home on Monday . . . Hopefully!