February 2, 2010
THE NEXT 36 HOURS IS CRITICAL
last week, parker was officially diagnosed with a mycoplasma infection. the day we were discharged from the hospital, i got my hands on parker's lab report that confirmed his test result was positive for an "acute/active infection". we immediately contacted DR H to let him know. he said it was crucial we got on top of treating this infection immediately and he promptly faxed over prescriptions.
over the course of this past week, we made the rounds to several other physicians to advocate on behalf of parker's needed treatment. all of the doctor's we saw agreed with the diagnosis...no one can understand dr big cheese's dismissal of it nor his subsequent refusal to treat it. however none of them have any expertise or experience in treating this type of manifestation of mycoplasma. but we were greatly encouraged when a doctor we saw at children's hospital indicated that she would be willing to partner with DR H in order to treat parker.
so by end of last week, we were feeling like we were finally getting somewhere and at long last finally had some answers. however the big question pressing down on everyone's mind was whether or not the mycoplasma infection was solely responsible for parker's symptoms or just part of the puzzle. we were so very, very hopeful that it was the whole but had an uneasy feeling that it was not... which is why i never let loose with a, "houston, we have a diagnosis" post.
parker has been on treatment for the myco for a week now. he is not responding. i spoke at length with DR H today. he says parker's symptoms/decline is far more complex than just mycoplasma. he said the only two things he can think of that would cause this intense level of pain and his other symptoms is lyme or cancer. both are on the table as possible diagnosis at this time. parker's situation is dire and time is critical. we have pretty much dead ended options in canada - and we cannot afford to wait on our system here to limp along trying to figure it out.
DR H made emergency arrangements for us to be seen by a specialist, DR D, in Seattle. he said that when the two of them work together on a complex cases they have excellent outcomes. well, we're all for an excellent outcome here.
graham, myself, parker and avery will be leaving for seattle tomorrow.
taylor must remain behind as he has a major big basketball game tomorrow nite. it is THE GAME of the season. i can't believe we are going to miss it.
i am more than just bummed to miss it - i am sick about it.
i am just plain sick about all of this.
the next 36 hours is critical...for all of us.
our appointment is Thursday morning between 9:30am -11:00am.
please pray for wisdom for the doctor. and peace and strength for us.