Saturday, November 3, 2012

There's a Fungus Among Us (Paecilomyces To Be Exact)

On Sept. 23 Collin developed a pneumonia in his left lung despite the IVIG infusions that he had received.  He was hospitalized and the doctors decided at that time to do a bronchoscope and see exactly what was going on his lungs.  They also did sinus surgery to open them up more and put another set of tubes in his ears. 

The day after surgery
He was sent home with a PICC line in his arm so he could receive IV antibiotics for three weeks to kill the bacteria in his lungs, sinuses, and ears.  They told us a couple of weeks later that a fungus had grown from the mucous they took out of his lungs, but they didn't think it would be an issue.  He began to put on weight and seemed to be developing into a strapping young man.  Then on the evening of Thurs. Oct. 25 he started spiking a fever, among other symptoms.  I was on the phone with the doctor off and on through the weekend thinking it was a viral infection and we could get him through it with Tylenol and Motrin.  On Sun. evening his fever went up to 104.1.  We knew at that point that there was something more going on.  On Mon. we took him back down to Joe Dimaggio's Children Hospital where he was once again diagnosed with pneumonia.  An infectious disease specialist was called in to review his case.  We learned that the fungus they found is actually quite common, it is found in the soil and therefore quite an easy thing for a boy to come in contact with.  The problem is that it has been known to cause severe complications in people with immune deficiencies.  So much for my theory in raising boys that "a little dirt builds the immune system".   The doctors now believe that the fungus is causing the repeat pneumonia's.  He was put on strong anti fungals as well as antibiotics in the hospital.  They are in the process of regrowing the fungus so that it can be tested to make sure the meds he is on are effective to kill it.  We absolutely hate the amount of strong medications he is having to take, but we have no other options.
Red Man's Syndrome from an antibiotic

  He has had some strong reactions to some of them.  The headaches and vomiting being the worst.  We are trying to get him on a schedule where he is less likely to get sick from them.  It feels like "one step forward, two steps back" right now, but we are praying that in the near future he will be able to start fighting all this "stuff" off on his own.  For now we are going on with life.  The doctors want him up and moving to build lung capacity, so that is what he is doing.  He has more will and stamina than anyone else I know.  The doctors say that is what has kept him from becoming sicker than he his and play a key part in his healing.  We are so thankful that God knew just the personality he would need to deal with his "thorn in the flesh".  He is truly "fearfully and wonderfully made".


Kimberly said...

i'm glad to see...but hate seeing this pic of him feeling so very, very sick!! hoping and praying that these meds. help!! (i like seeing that Dr.'s pic, too!!) sending lots and lots of love & prayers for everybody....

Juwah said...

Kayla,since I have been a loser blogger, I haven't checked my friends blogs either. So sorry to have been missing this a crazy woman I've been typing in the very long medical terms at medical websites and was trying to understand Collin's illness. Your translation makes much more sense. We sure are praying for Collin and all of you. I can't imagine how difficult this is for your family. But I know exactly where Collin gets that stamina you speak of. He's got one tough Mommy and I am proud to know you. Much much love and prayers my dear friend.

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