More Mysteries

Shaun:
After running a low fever on and off yesterday, Charlie spiked a high fever (about 103) again late last night after his hip fluid draw.  At the same time, his blood pressure started falling.  This is what led to a Life-Flight two weeks ago.  The doctors decided to again start him on antibiotics and steroids.  At 3:00 a.m. He had diarrhea.  This stool was tested and came back positive for C. diff.  However, the doctors are concerned that this positive finding may be residual from the last infection, and not an active new infection.  Therefore, they ordered a test to determine whether the C. diff presently in his stool is actively producing toxins. 

The doctors are concerned about chalking the fevers up to C. diff for fear that they may overlook something else.  The inflammation in Charlie’s joints and bones may be a side effect of chemo, a viral response, or it may indicate some type of infection.  The doctors seem to be feeling confident that there are areas where the marrow in Charlie’s bones is dying, and that this is due to the chemo.  While this is a serious problem of its own, they don’t think this is the most likely cause of the fevers.  

A CT scan was ordered this morning to look for pockets of infection in Charlie’s abdomen/pelvis areas, but was called off after revisiting the MRI from yesterday.  A full body scan is still a possibility if they don’t find the source of these fevers soon.  In the meanwhile, Charlie’s hematocrit (volume percentage of red blood cells in the blood) continued to go down today (21%) and a blood transfusion was ordered.  

Charlie's sodium jumped to 138.  That's too high too fast.  So they backed off the sodium solution they are giving him.  He's getting fed at a slow rate, but they stopped his food and put him on NPO (orders for nothing to eat or drink) when they thought he was getting a CT scan with contrast.

Orthopedics was brought in to check Charlie as well.

Brendan playing with bubbles in his feeding tube.

Is this related to the bone marrow issues?  To the fevers?  Apparently, if the body has to work to hard to produce blood, fevers can occur.  Chemo can cause the body to struggle to produce blood.  With all of these variables, the Infectious Disease (ID) team was called in today to begin focusing on figuring out what is causing these fevers.  A number of new tests were begun by them today.  They are indicating it will be at least a couple of days before these tests will give them the information they need.  Until then, Charlie will probably be staying here for a while.  

On the bright side, the pain in Charlie’s hip was much better today - the doctor had indicated that removing fluid from the joint may help.  Charlie was able to get up today and do a few exercises and he is in much better spirits. 

 Rachel and Lindsay came and spent time with him.  He loved that.  

New St. Patrick's Day and Spring pillowcases from Sariah and Savannah Summers with embroidery by Michelle Hancey. They match the holiday set he received from them last fall.

Aunt Shara stopped by last night. 

He’s getting his blood transfusion now, and sleeping soundly.  Maybe we’ll know more tomorrow, although Sunday usually isn’t the day when much is being discussed short of emergencies. 

Maybe this blood came from someone from our stake blood drive?

Today Charlie had to have his port access changed.  (They change it once a week when it is accessed.)  Charlie's comment today to the trainee nurse:

  "One thing you need to understand-- We're doing this MY way!"  

He certainly has the most experience :)