Questions, Questions and more Questions

It has been almost two weeks since the last update.  A lot has happened, though unfortunately Jadon is really non the better than he was as of last update.  He has still had continuous fevers since his operation.  Despite many attempts at finding a source of infection, the doctors, including specialists in Infectious Diseases have come up empty.  He is still on the ventilator, with settings going up and down a bit, depending on how his lungs are coping and his breathing is going.

Last update, the plan was to plicate Jadon's left diaphragm (tie it down so the lung could inflate better).  A few days later, we were told that likely the better course was to let Jadon rest for several more weeks in the hope that the phrenic nerve (which controls the diaphragm) would spontaneously heal (which does occur with some level of frequency).  To this end, the plan was to wean Jadon off the ventilator onto CPAP or BIPAP (using a mask to blow are into his lungs).  Jadon had aspirated his feeds while previously on this setting, so the decision was made to remove his NG tube (through nose into the stomach for feeds) and replace it with an NJ tube (through nose and into the small intestine).  At the same time, they wanted to remove the blood line into his neck and replace it with a PIC line - an IV line fed from his arm and directly to the spot above his heart.  This is a more permanent IV that allows for rapid spread of medicine throughout the body.  So last Monday, Jadon went into IGT for these two procedures.  We were told it would take between 30 minutes to about 3 hours.  We were not surprised when Jadon's procedures took nearly the full 3 hours.  They had challenges with both procedures and while they were ultimately both successful, both of the tube's path and placement are different than the ordinary.

Later Monday evening and into Tuesday, the incision site on Jadon's chest started to seep and ultimately, was shown to be infected.  More antibiotics were ordered to try and keep this infection at bay.  To see how badly the area was infected, on Friday Jadon underwent a chest CT.  It turns out that the infection is mostly superficial and has been clearing up with the antibiotics and dressing changes.  During this time, Jadon's ventilator settings have been slowly creeping up, meaning that the opprtunity to wean him toward the BIPAP was becoming less likely.  With this in mind, we were once again told that plication of the diaphragm may be the best option.  However, with his chest infection and continued fevers, that decision would be delayed.

In the meantime, due to his heavy doses of antibiotics, Jadon tested positive for a gastro bug which led to him being moved to an isolation room.  While it is a pain in many ways and we must be gowned and gloved when we interact with him, it has proven to be much quieter and Jadon is sleeping much better in his new room.  However, still no answer as to where the fevers are coming from.

Tomorrow is a big day.  Jadon will be discussed in pre-op meetings with a group of likely 30+ doctors.  They will discuss the pros and cons of plicating him and come up with a more concrete care plan.  We pray for wisdom for the doctors and all those involved in his care and we hope that tomorrow will be the beginning of an upward path of healing for little Jadon.