Defcon 3

Yes, I named this post after the U.S.'s military defense readiness scale.  It seemed more catchy than "Here We Go Again."  And also, it forced me to research the scale and what the numbers mean.  So we are at 3 because "Armed forces readiness increased above normal levels; Air Force ready to mobilize in 15 minutes."

Yup.  Sounds like us.

First, I'd like to apologize for not updating immediately after surgery as was planned.  Robbie was discharged late the evening after the surgery.  We arrived home at about 930pm and after getting everyone else settled into bed I was headed to sleep myself (Did you READ my post from the night before?  The mistakes bothered me so much I had to go back and edit it.  I was WAAAAAAAAY too tired to have been writing!).  Just about 30 seconds before I would have climbed in to bed my phone began to ring.  I'm not going to be sharing details, but on the other end was a dear friend of ours headed to the hospital themselves.  So two hours after leaving the hospital I was headed back - and remained there until about 6am the next day.  What followed was a very traumatic week long hospital experience for our friends and I chose to direct all of my energy to reestablishing routine for our (patient, loving, amazing, flexible) children and loving on our friends rather than updating the blog.

Which brings us to last Sunday, March 8th.  A week and a half after hospital discharge we didn't expect Robbie to feel "normal" or to be at 100%.  His fatigue level had been extremely high but after 2 surgeries, 3 hospitalizations, major surgical complications, and a complex, unusual diagnosis in 6 months and nothing but fluids for 6 days during the hospitalization we weren't expecting him to run a marathon.  Or even a mile.  What we WERE expecting was for his recovery to continue on the trajectory it had been on for the first 10 days post-OP: a slow, steady improvement in mobility, energy and pain levels.

Instead, beginning on the 8th the pain began to increase, the tenderness returned and his belly began to blow back up.  When we saw his surgeon this past Thursday the distention and firmness of Robbie's abdomen were of pretty definite concern.  So.....  Congrats to him, Robbie gets to have his first colonoscopy a few years early!!  The surgeon feels confident that the small bowel isn't obstructed this time, but he is hoping to see what MIGHT be going on.

In the mean time, Robbie has also been very busy attempting to receive follow up care for the Valley Fever he was diagnosed with last December.  Robbie was hospitalized for almost a week last September after a soft-ball sized hole in his right lung was found by "accident" while he was undergoing a CT scan to follow up on the post-surgical abdominal pain.  The docs were beyond astounded that Robbie was functioning so well and had no respiratory issues with such a large cavity in his lung!  He was hospitalized while they ruled out Tuberculosis and we received word that the biopsies were negative for cancer by October, but it wasn't until December that we were informed that the biopsies did finally grown out the fungus coccidioides which causes what is commonly known as Valley Fever.  This fungus only grows in a very small area of the US, most concentrated in Arizona.  The vast majority of people who breathe in the fungus (which is pretty much EVERYONE who has ever lived in or visited the greater Tucson area) don't even realize that a short period of illness with flu like symptoms that they experienced at some point in time was caused by the fungus.  And then most of those folks never have another issue with coccidioides.  Then there are the weirdos.....which obviously brings us back to Robbie.  Some folks develop a long-term disease process where the fungus disseminates to other parts of the body or continues to cause nodules, inflammation and other complications for the patient.  

Robbie was finally able to be seen by an Infectious Disease doctor in Houston 3 days before his last hospitalization.  No one in this area is familiar with Valley Fever really at all, but this physician has received special training from the Valley Fever Center at the Uni of Arizona and is currently treating 2 other VF patients as well.  The ID doctor has him on a year-long course of high dose anti-fungal medication and is monitoring the hole in his lung.  However, he also let us know that there is an up to 50% rate of development of fungal meningitis when a patient has Valley Fever that has progressed to the point where Robbie's has.  This would change the trajectory of treatment greatly as there is no cure for this kind of meningitis and treatment would have to be life-long.

SO.......... next week Robbie has a PHENOMENAL line-up of activities planned for his Spring Break!!!!  His colonoscopy is scheduled for Monday and a lumbar puncture to test for the meningitis is on Thursday. He just figures if there was some way to fit a root-canal in there he would have the PERFECT break planned.  :)

Ever the Joker.

So....  Our biggest, hope, prayer, request right now is that the meningitis testing come back negative.  That would be (manageable but) life changing.  Secondarily we would REALLY appreciate the essentially constant pain and discomfort in his belly to finally be solved.  Forever.

We continue to appreciate your interest, prayers, concern, questions, meals, love, help, babysitting and comfort.  You guys rock!