January 21, 2010


it's been another long day.

parker has been kept in hospital again
graham is staying with him
i have come home because i have to run my IV MEDS! yes, in the midst of all the craziness, i have had to re-start IV treatment.

parker will be seen by a neurology doctor tomorrow morning at 9:30am
then sometime between 8am and 12pm he will be evaluated by pain management doctors and infectious disease doctors.

the infectious disease doctors have been called in to "discuss the lyme issue" with us.
please pray for this meeting.
we just really don't want to debate or defend MY lyme diagnosis (which has already been scrutinized multiple times in the past 24 hours.)
we're not pushing for a lyme diagnosis for parker. after all, we really don't know what is wrong with him. all we know is that his symptoms are very, very, very suspicious for lyme. all we want is for them to give parker's suspicious lyme like symptoms a fair and unbiased evaluation. doesn't sound like too much to ask but past experience has proven that it is too much to ask. my medical care wouldn't be coming from another country if lyme was given a fair shake here...so we guard our hearts and steel our emotions because we know that there is a strong possibility that we may face open hostility and ridicule for requesting lyme be on the diagnostic differential. we've been done this road so many times before.
but the eternal optimist in me will always hope for, always push for, always advocate for this to change... that being said, a huge emotional price is paid in doing that.

but i know that God is bigger than all of this mess
that is the balm that allows my tattered heart to keep moving forward.

we learned today that blood work done on parker during our december 11 visit to the children's hospital ER had rendered a positive result for an acute infection called mycoplasma. somehow this result got missed in the shuffle of paper work.
and no one noticed until today.

we feel this positive result is significant.
mycoplasma can be a co-infection of lyme disease. it is an infection transmitted by ticks... but it can also be transmitted through other means. the general pediatric doctor who gave us the mycoplasma results today told us that they usually only treat mycoplasma with one week of antibiotics.
i'm no doctor but i don't think one week of antibiotics for a cell wall deficient bacteria is going to annihilate the infection.
and i said as much to the doctor (who, by the way, in all fairness, was really a lovely and kind young man). the kind young doctor then responded that he really didn't know too much about mycoplasma and that this infection really falls under the umbrella of infectious disease.
the infectious disease doctors we see tomorrow will be responsible for treating this infection in parker. they have been given DR H's phone number and we are hoping and praying that they will speak with him and consider his opinion when coming up with a treatment plan for parker.

after all, it is because of DR H that the mycoplasma testing was done. yes! that's right! parker was tested for mycoplasma because we requested it because DR H told us to get him tested for this. when we saw DR H in SF on dec 7, he suspected that there was a possibility that at least some of parker's symptoms could be explained/were suspicious for a mycoplasma infection.



Anonymous said...

Pray! Pray! Pray! That is what is being done and God has heard and is doing great things.Genesis 21 :17. Shannon you are the only person here who truly understands Parker's pain because you experience it also. But God knows and has heard his cries and is sending help.Keep looking up! God give you strength , grace , peace today. Love Betty

Nonerz said...

each day I anxiously await your updates...praying that these new doctors will work with you guys & have an open mind.