More fun with side effects...

Friday May 3rd.

We have been constantly reminded why we generally seek the path of most natural healing...side effects are popping up everywhere.  Taylor took Oliver to the pediatrician today because we noticed white spots in his mouth and suspected thrush (from the preventative antibiotics...even the probiotics couldn't keep it away this time since his immune system was so suppressed). Dr Dumont confirmed and prescribed liquid Nystatin. Oliver loved the Nystatin and the only challenge was getting him to let us apply it to his mouth without him sucking out the contents of the dropper first.

Dr Dumont also examined Oliver's belly as it is drastically distended.  (If he were pregnant, I would anticipate a herniated belly button at any second.)  The doc noted that Oliver's liver placement was low- whatever that means.  Taylor called the neurologist after the appointment and reported what the pediatrician had said.  Dr Leber ordered an ultrasound for Monday when we would already be at the hospital to begin Rituxan infusions.  As a mommy, who was not at the appointment and therefore felt like she missed some critical piece of information, I was somewhat comforted that they didn't feel it was so urgent that he needed an ultrasound immediately.  

 Praise God, we are down to one ACTH injection a day:) Despite the decreased dosage, the ACTH is causing Oliver to sweat profusely while sleeping.  Naptime or nighttime.  Despite the air temperature, fan speed or number/weight of blankets, he sweats through the pillow case and sheets.  I have gone back to "soaking diapers" mind set and put an extra sheet protector covered with a large receiving blanket on top of his actual sheet which has the same set up repeated underneath the mattress pad.  We can peel off the wet top set in the morning and the sheet and bottom set after nap time.  So, we only change the entire bed once a day at most.  (every now and then, it isn't necessary to peel a layer)  We have also figured out how to add an extra mattress protector to his pillow so only the case and protector need to be changed and the pillow itself doesn't get wet.  Necessity is the mother of invention:)

Napping with daddy