parker continues to suffer as a result of the canadian medical community putting lock, stock and barrel on his IV treatment.
since his IV stopped, his symptom flares have gotten progressively worse and his suffering has intensified. he is still much better than he was, say a year ago, or before starting treatment, but his decline since february 3rd has been significant. the extreme episodes of debilitation that he is once again experiencing had not been present since last spring.
carried in dad's strong arms last week
too weak & too much pain to even crawl up the stairs
he does still have days where he experiences periods of feeling "okay" and is able bodied. we keep tabs on his pain levels by using a scale - "0" is no pain, "10" is worst pain ever. parker has not been a "0" since prior to getting ill in september 2009. he is never not in pain. and there is no relief. his pain is intractable - meaning it responds to no pain interventions or medications. when his pain levels exacerbate and hit 7 and above, there is no relief. those are the times when he must dig deep and ride it out. that is all any of us can do.
"the beauty of the soul shines out when a man bears with composure one heavy mischance after another,
not because he does not feel them, but because he is a man of high and heroic temper."
those are the times, as we helplessly watch him writhe in pain and listen to his moaning and screaming that our hearts are ripped so violently from our chests it seems impossible we'll ever heal from the residual trauma that leaves behind. there are no words to describe what it is like to watch your child suffer and know there is NOTHING you can do to relieve that suffering. during those times, as counterproductive as it is, you still do or try anything that could possibly alleviate the suffering. i have lost count of the times, i've collapsed in a weeping, sobbing heap outside the bathroom door pleading with God to bring some sort of relief to my boy as he lies screaming in a medicated bath behind the door.
needless to say, he has had to learn to cope with an extraordinary amount of pain. as a result, as soon as his pain levels drop below a "5", he is able to make the best of it and do stuff.
parker at a pain level "4" enjoying pool at our hotel in california
an hour later, he was in bed moaning in agony
his ability to remain active is impacted by his fatigue and pain levels. at any given time, and for no apparent reason, his pain level can go from a "5" to a "8 or 9". sometimes his level "5" lasts long enough to be active for an hour or two, other times, it only lasts for 5, 10 or 15 minutes. since IV stopped, his daily pain levels have increased and fairly consistently hover around a "7". as opposed to when he was on IV and they generally were at a "5" or less. his stamina has significantly decreased as well, so he may be at a level "5" pain but no longer has the energy to be active. whether due to pain or fatigue, he is more often than not, reliant on his wheelchair again.
lego is one of parker's passions
we found a cool lego store in san jose during this trip
we were recently in california to see DR H. the results of his exam and assessments on our son reveal (among other things), a swollen spleen. the spleen can be considered as two organs in one; it filters the blood and removes abnormal cells (such as old and defective red blood cells), and it makes disease-fighting components of the immune system. currently, parker's spleen is taking a double hit;
first, since IV was forcibly withdrawn, parker's body (and organ systems) are struggling to cope with his increasing levels of infection. the IV meds targetted his lyme infection. this helped alleviate the stress of that infection on his body and allowed it to focus its energy on fighting his babesia infection.
secondly, babesia is parker's 'primary' infection. lyme aside, babesia on its own puts a great strain on the spleen. babesia is caused by a parasite that invades and destroys the red blood cells, sometimes faster than the body can replace them.
the symptoms that babesia causes in parkers body are severe seizure like tremors, twitches, air hunger, migraines, body temperature disregulation, profound fatigue, cognitive disfunction, intense and intractable bone pain, facial rashes, and a whole host of additional debilitating symptoms.
we are clearly needing to put some sort of treatment plan in the works for parker. this is becoming increasingly more difficult as recent events lead us to believe that the medical institution responsible for blocking access to his IV treatment, is now attempting to block access to all aspects of his USA treatment. somehow and someway, we and his USA medical team, have to work within the restrictive and unwelcome parameters that are being forced upon us...parameters that have been implemented by a group of physicians of which most have never examined parker or had him as a patient. one doctor saw parker only twice. during the first visit, he was only given a cursory exam. (weight, height, blood pressure, quick listen to lungs and palpitation of his tummy). upon completing the bare bones of this basic exam, the doctor declared,
"well, he looks fine to me."
the rest of that appointment and the subsequent follow up consisted primarily of this doc advising us to pull his picc line and stop ALL his abx treatment. i suggested the doc (a pediatrician) was stepping out side of his/her area of expertise. i queried as to what his/her knowledge or experience was with treating lyme.
he/she admitted they had no experience treating it and that they actually knew very little about the disease itself.
it is only based on this doc's opinion that "chronic lyme does not exist" and because the insitution that employs this physician shares the same opinion, that they moved to block access to our son's crucial medical treatment.
it boils down to a matter of opinion and an unwillingness to re-consider that opinion even when presented with scientific evidence that flies in the face of that opinion.
this opinion puts our son's recovery and very life in jeopardy.
we live in a sick world.
furthermore, a soon as this doc (and group of physicians involved) had confirmation that parker's picc line had been removed, he/she fired him as a patient. yes. they no longer wish to see parker as a patient. they are of the opinion, and i quote them,
"the removal of his picc line fulfills our duty of care. if he becomes ill, you are welcome to bring him the the ER."
if your jaw just dropped over that, trust me, you are not alone. i had to read and re-read that letter 10 times before i believed that what i was reading was really what i was seeing.
we live in a sick world.