OK. let me lead off by saying that detailed accounts of our experience with the documentary film crew are in the works. i jotted down notes throughout so i wouldn't forget the events. which is a good thing because we actually ended up filming for 3 days. one day in california and two days in our home. it was a whirlwind and much of it passed in a blur of emotions...i needed some "down" time to process it all before i could even attempt to formulate my random thoughts into a cohesive and entertaining read. however, 'down' time is hard to come by - even on a 'good' week. and the week or so since our return things have hardly been "good".
actually, it would be more accurate to say that it has NOT been ALL bad. indeed, we had a wonderful but itchy answer to prayer in the week since our return.
i am happy to share that our (and your) prayers for an MRI for parker were answered. it took a major fight and much perseverance but i am happy to share that parker has HAD his MRI. praise God!
sparky about to get his much prayed for MRI
let me break it down... first we asked for prayer that he get an MRI quickly. not an easy thing to come by in canada. the waits are notoriously long. add to that the complication of getting one for a pediatric patient OUTSIDE of the children's hospital but WITHIN the public health care added an extra dimension of challenge to the mix. the request was made in middle of October. the first referral to hospital in our city was rejected. they did not do pediatric MRI. this delayed even a processing of our doctor's referral. this meant another round of calls to find a hospital that would do one.
finally, one was found. however, because of the aforementioned delays, the referral was not sent in until the beginning of November. it took another week and more phone calls for it to be processed and an MRI to be scheduled. the date of Jan 11 was a relatively short wait. but we still felt that that was not short enough. we continued to request prayer and pray for a shorter wait. two days later, we were re-scheduled for dec 11.
we were thankful... but we continued to pray that this new date would be rescinded and we'd get in even earlier. during all of this, parker's vision issues were getting progressively worse. knowing the possibilities of why this could be happening had us anxious to get an MRI done ASAP. so yes, even the dec 11 date for an MRI (which at that point was a mere 4 weeks away) felt way too long a wait.
then, of all things, the hospital had a flood and as a result, the MRI machine was destroyed. who could ever anticipate such a thing? i could but couldn't believe it!! that kind of stuff just happens to us - the most bizarre roadblocks just pop up in our life and keep the road challenging to navigate.
parker's MRI was cancelled and no alternate date was given. at all. this brings us all the way up to when we left for california (nov 27). we were even making calls in the airport, scrambling to find yet another hospital. just before we boarded our flight, graham was able to find a hospital. he called our doctor's office and asked them to fax the referral to this new hospital. i might add here, that it is not normally the patient's job to find a place for their doctor to send an MRI referral. however, parker has fallen thru the cracks so many times that we have found it is necessary take on many roles when it comes to negotiating and advocating within the system.
upon our return from california (dec 1) we learned the MRI had been scheduled for april 2013. this was terribly upsetting news. again, we made more phone calls.
it was stressful. it was draining. it was uber frustrating. it was physically and mentally exhausting to persist in holding those in the medical profession accountable to appropriate and timely follow through. however, in the back of my mind, i somehow dared to consider something impossible... what if, after all of this, he actually ended up getting his MRI earlier then the dec 11 date? hadn't we been praying that that date would be rescinded? i certainly hadn't prayed for a flood but what if... (i assume no responsibility for it occuring)
i had a conversation with the Lord about it. albeit, a slightly perturbed one.
"ok Lord, along with a multitude of folks, we've been praying that parker's MRI date would be moved up from dec 11. today, is dec 4 and we now have a scheduled date for april. what are you up to?"
on dec 5 the hosptial called and told us they had an opening for parker to get his MRI on december 7th!
this answer to prayer made me laugh and cry.... even as i write this, it still makes me well up with tears.
unfortunately it has made parker itch like mad.
the rash begins
5 hours after having the MRI, parker had a (pretty severe) allergic reaction to the contrast dye used in the MRI. at least this was not an unforeseen speed bump, we had anticipated this. two reasons;
first, he had a reaction (but milder one) to xray dye 2 years ago. a past reaction tends to mean you'll react in the future - and those reactions can become progressively worse.
second, he has a Mast cell disorder called Mast Cell Activation Disease (MCAD). This disorder puts him at a greater risk and predisposes him to allergic reactions and anaphylactic shock. (you can read about MCAD here and here - this post will be too long if i go into a detailed explanation of this disorder.)
this disorder is not curative but there is treatment that helps to control the disease. the treatment protocal includes daily doses of multiple anti-histamines and other medications that are "mast cell stabilizers". in addition to his standard doses, parker was pre-medicated for the MRI. meaning, his doses were doubled up in an effort to stem off a severe reaction. we continued to medicate him with these increased doses and added in another anti-histamine afterward
we are thankful he did not have an anaphylactic episode. we suspect that the medications stemmed that reaction however, he has been COVERED from head to toe in hives and an itchy, angry rash for nearly a week now. it is a horrible reaction and has flared all of his other MCAD symptoms plus his lyme; he is continuing to endure severe bone and joint pain, fatigue, bouts of diarrhea nerve pain, flushing, mild shortness of breath, shaking chills.
about 18 hours after it started, it seemed to be going away however in short order, it returned with a vengeance. this was very disconcerting. with MCAD, there is always the fear of anaphylaxis. most folks are familiar with the more common or typical anaphylactic reaction that usually takes place within minutes of an exposure to an allergen. MCAD and/or systemic mastocytosis patients can have an anaphylactic reaction take place days after the initial exposure. based on that and the fact that parker was maxed out at highest doses of multiple medications and the rash was progressing and continuing to get worse, we finally made a visit to the ER on sunday afternoon.
Sparky at ER
going to the ER was not a decision we made lightly. going to ANY hospital is the last thing we want to do. we still live with the fear that what children's hospital did (threaten to call in Child Protection Services & MCFD in an effort to remove parker from our care) will happen. i cannot explain what it is like to live with the fear that taking your child to the hospital for medical help feels unsafe and dangerous.
graham told me afterward that he was on high alert and in "fight or flight mode" the entire time we were in the ER. i was blessedly not as stressed about it. MCAD is a "recognized disease" in canada (DR H, our USA doc originally diagnosed it but we are now seeing a canadian allergist/immunologist for treatment of it) that being said, it falls under the umbrella of Mastocytosis which is classified as an "orphan disease" meaning it is a rare condition. therefore the ER Doc did not know a whole lot about it. he was fairly dismissive of us because parker had no respiratory issues. the ER Doc did tell us that prednisone (a steroid) is some times used to curtail an allergic reaction but he felt that use of that was a decision that was best left up to parker's immunologist. fair enough, i suppose.
Sparky's arm - 4 days after it started
i know that prednisone is often used as a last resort to treat MCAD patients. however it is contraindicted when one has lyme. in fact, steroids and lyme can be a lethal combo. it is not a treatment we would implement lightly and certainly didn't want to face a decision about using it unless we had spoken with DR H first. so, even thought we felt like the ER doc could have done more, we are glad that we felt the need to fly under the radar whilst in hospital. biting our tongue rather than pushing for immediate help probably kept us from having to make a decision about the use of steroids and that would be a precarious position to be in.
we left the ER with instructions to follow up with parker's immunologist. which we have tried to do. this has proven to be a very upsetting endeavor. we are not exactly happy with this doc. furious is more accurate. we do not have an emergency contact number for him. but we have been leaving messages at his office since Sunday. it is now wednesday and we have not had a response. i am absolutely bowled over by this negligence.
sometimes i really struggle with the feeling that my kid ALWAYS falls through the cracks or worse, has been kicked to the curb by many doctors. why don't they freaking care? i don't know why i still seek or need that validation from the mainstream canadian medical community. when i get fixated on that, it is easy to overlook the fact that we do have doctors that are working on parker's behalf. furthermore, they often go above and beyond the call of duty.
even the soles of his feet and palms of his hands are covered
we contacted all 3 of parker's lyme literate docs. DR D and DR H responded within hours. DR C got back to us - even tho' his office was closed and it was his day off. yes, our sparky boy is in good hands. that's a good thing because he is a very sick kid.
Getting IV support at DR C's office
we are implementing the treatment protocals that DR H and DR D prescribed. DR C is assisting us with this. these will be started today (wednesday) at DR C's office. if parker's rash has not improved by friday than he will have to start a short course of prednisone. it is DR H that made that treatment recommendation. he has (already) prescribed it. we are scared to put parker on predisone but trust DR H's expertise in navigating this type of tricky medical decision. we would not want it any other way.
so, we have til friday for things to turn around. for the rash to get better. for the itch to stop
i pray that they do.
after all, friday also happens to be parker's birthday. and it's a big one. thirteen. i'd love for him to have an itch-free day. becoming teenager is hard enough.