Caden’s day was not so smooth, but his night has been great so far. He did have a fever again, but the doctors have finally agreed to add an antibiotic to treat sinus and ear infections as well as pneumonia. They are now giving Caden Rocephin via IV. There is no diagnosis of pneumonia, but this will cover Caden in that area as well.
There has been some confusion over who is calling the shots on Caden’s care ever since the surgery on Tuesday. The surgeon said, I am just the technician” and the attending in the PICU said they deferred to cardiology. The cardiologist initially said they were only consulting on Caden’s care due to his heart history and they repeated that stance today. But then the general peds doctors on the floor said they are consultants on Caden’s care and the primary care doctor is the orthopedic surgeon who initially said he was just the technician. I get the fact that the orthopedic doctor should drive the recovery of the surgical process, but Caden came into the hospital on an antibiotic for sinus and ear infections. His ears have been running and he has been congested. The congestion can and may very well be attributed to the anesthesia, but he ears…no. Caden has been retaining a lot of fluid and has required a couple of doses of lasix type medications, but getting an order written for lasix has been like pulling teeth due to the circus of “Whose on First” style communication. This is not our first communication issue related to the orthopedic surgery department here at MUSC. Poor communication is what pushed us over the edge to seek a second opinion from Children’s Hospital of Philadelphia a couple of years ago:
“The reason for wanting a second opinion is that we are not 100% comfortable with the communication between the orthopedics doctor and us. He is not quite as forthcoming with information as we prefer to have. The information has varied with little to no explanation… ” Scoliosis Diagnosis Update, April 2008
Needless to say I am having to exercise an above average degree of self control and suppress my (choleric temperament driven) desires to grab a few of these doctors up by the collar and tell them to lead, follow or get out of the way. As long as we keep our cool and follow up with the nurse to ensure the doctors write orders for what they say they are going to do we should be fine. So far that has been a bit of a challenge, but we are working on it.
Finally, seven hours after ordering the Rocephin Caden finally got his first dose. He is resting better now than I have seen his rest since the surgery on Tuesday morning. His oxygen SATs look good, however he is still getting 2 liters of oxygen via cannula and skunk spray blow by at set at 10 liters. His heart rate is down to 140 verse 175 last night. BTW…Caden’s no pain, fever free baseline heart rate is about 95-105 while sleeping. Do you know what your child’s normal heart rate is? If I didn’t have a child like Caden I wouldn’t. Anyway, his fever has disappeared and he finally got some medicine to help with the itching. I’m not sure why they don’t prescribe anti itch medicine with morphine in the first place. They did with Sherry when she had her last C-section in May. Even without the Morphine Caden is likely itching due to some of the adhesives used on leads, IVs, and other devices we have not even been able to see on his back. The picture on the right shows how Caden’s skin reacted to adhesive during a heart surgery two years ago this week. (click the image for a closer look)
I have not shared the following outside of my Facebook page, but I feel that it is very important to share so that you understand the greater context of what our family is dealing with right now, especially for Sherry. Sherry’s mom has been battling an very aggressive form of brain cancer since being diagnosed in late March. Sherry’s mom and dad (Joe and Darla) moved back to the Charleston area before Christmas to be nearer to us and provide help with our boys. We realized later that God was putting them nearer to us so that we could help them instead of them helping us. Sherry’s mom has been through chemo and radiation and is not back on another round of chemo. She has been very tired in recent days and has been upset that they have not been able to help more during Caden’s recovery. I ask that you pray for healing for Sherry’s mom. Tonight Joe and Darla were able to bring Sherry dinner. We were very glad to see her mom be able to get up and about today.
Thanks again for following along and praying for Caden and our family. He is a strong boy, but none of this would be bearable without the strength the Lord brings to Caden and our entire family. We ask you to continue to pray for Caden as well as his little neighbor from back in the PICU. Her grandma says her report was even better this morning. Also keep our little friend Olivia in your prayers. We learned that she was admitted to MUSC with an extremely high fever due to pneumonia. You can read about Olivia’s progress on her Caring Bridge Page .