Caden has been experiencing some pain with a piece of titanium hardware that is protruding against his skin from the inside. Caden had a follow up visit with the orthopedic surgeon this past week. The surgeon originally wanted to perform Caden’s next surgery (rod adjustment) at about the six month mark from his his original surgery. That would have been near the end of March. Once he saw the spot on Caden’s back where the hardware is nearly poking through the skin the surgeon said we need to move the surgery date up. He is mostly booked up for the month of January but wants Caden in for his next surgery no later than the beginning of February. Sherry is going to call them back this week to see if we can get in sooner than later because the spot seems to get worse by the day. We are really concerned about the idea that titanium parts could poke through Caden’s skin any day. The hospital stay is expected to only last as long as it takes for Caden to recover from the anesthesia. We hope that will be only one overnight stay. UPDATE: Surgery date set for January 18, 2011.
Infectious Disease Update
Caden recently had a follow up visit with the Department of Infectious Disease. It was great timing as Caden had just reached our threshold for intervention (with antibiotics) due to increased symptoms. Caden had been having increased secretions, he was lying around during the day, and his oxygen SATs were dropping. What we normally look for to trigger a trip to the doctor is for his SATs to be below 94 awake, below 90 asleep, or to have a high fever that cannot be controlled with easily with Tylenol and/or Motrin.  There are more serious conditions that have led to ER visits or even ambulance rides, but those indicators are not as subtle as indicators that lead us to check for low SATs. Now we have the added complexities associated with pain management caused by the recent scoliosis surgery. The pain medications can/do often suppress fevers so detecting illness is a little more difficult. The day after the infectious disease visit Caden began having a high fever in addition to his other symptoms even with the frequent pain meds.
The doctor from the clinic touched a nerve with Sherry and me. I am pretty sure the doc misinterpreted our reason for going to the Infectious Disease clinic in the first place. He was suggesting that we might want to let Caden go farther before intervening with antibiotics. I assured him that we have a very good track record of discerning when Caden needs antibiotics. While we want to reduce the need for antibiotics it is not because we are opposed to the use of them when needed. In the end we had to explain that we were interested in finding ways to help Caden avoid the need for antibiotics, but once he needs antibiotics we are not interested in making him suffer unnecessarily simply to avoid using antibiotics. In the end the doctor agreed with my theory that Caden’s upper airway anatomy is likely the cause of most of the sinus infections. Caden does not swallow, but does chew a lot creating secretions, and has a sub-mucus cleft pallet that creates a path of least resistance up through his sinus cavity. That all adds up to every germ that goes in his mouth pretty much gets sampled by his sinus cavity before his saliva runs out his nose. I explained that we have had botox injections into his saliva glands to try an minimize the amount of secretions, but the procedure was unsuccessful. We are now trying “The Vest” by Hill-Rom prescribed by Caden’s pediatrician to help keep Caden’s airway clear. So far the health insurance has not approved Caden for The Vest so we may be sending it back if insurance does not get on board. We don’t have the approximately $16K needed to pay for the machine outright.