yesterday marked the end of the 7 day IV provocation trial Parker was on.
from where i sit the next step in our journey appears unclear.
during the 7 day trial, we did see a return of psychiatric episodes. they were mild but they were undoubtedly there. they came at the 72 hour mark of restarting this particular iv drug. this most likely means one thing - parker still has bugs in his brain...and IV treatment is his best shot at eradicating them. and yet, due to collateral vein complications, his PICC line must come out. we've kept it in (nearly 4 months) for as long as we can.
i just want this all to be over. i want it to end. all of it to end.
last week parker hit a wall. he cried. he rarely cries. he rarely even complains. his birthday was in december. he was too sick to have friends over for a party. again. his big plan for his special day was to go for lunch with my dad. he was really looking forward to that. yet, he was too sick and in too much pain to even do that. his birthday lunch and dinner were eaten on the couch.
it was heartbreaking for graham and i. we went to bed with heavy hearts. the next morning, i mentioned to parker how i was sorry that he'd had a bummer day. with a puzzled look, he replied, "what do you mean mom? i had a great day."
gulp. he is an "old" 12 year old. i learn a lot from him.
yet, we all have our breaking point. and last week, he reached his. he came into my room and lay down beside me. even tho' he didn't say anything, i could sense his sadness. it was emanating from him. at first giant, silent tears slowly rolled down his flushed cheeks. yet, he still quietly lay there, trying his darndest to remain strong and brave. "there is strength in tears." i whispered. "it's okay to be sad, buddy. don't hold it in." and then it came. he sobbed for the pain he has endured. he cried out in the pain that he is still in. he grieved for all that has been lost. he vented and gave in to the hopelessness that is only ever a heart beat away. "i'll never get better. nothing helps. nothing changes. i've been sick for over 2 years. this will never end. i never see my friends. i hate taking pills. i'm tired of IV. i hate my life."
all i could do was wrap my arms around him and acknowledge his pain and his fears. yes, it feels like it will never end. yes, it is unfair. yes, it has been too long and too much and too awful. yes, it sucks so bad that it sometimes sucks all the hope out of me too...but there is always hope.
no matter how hard it is to believe, no matter how it appears, this will end. i can't tell him when it will end. i simply don't know. that is one of the hardest parts about this journey. there is no end date to aim for and to hold on to as a beacon of light. will it be 2 more weeks, 3 months, 9 months or 18 months or longer...there is no way to know...we must just hold on even tho' the end is an undefinable, indefinite time frame...we must hold on with no end in sight and somehow hold on to the hope and keep the faith and belief that it WILL end. we have to believe that. we have to hold on to that.
and now we arrive at today. and where we must go and what we must do. and what is the next step.
and i find myself contemplating not great options.
the PICC line must go. that much we know for sure. however, since parker's response to the provocation revealed there are (most likely) still bugs in his brain, then continued IV is the best option. IV most effectively penetrates the blood/brain barrier. it is possible to achieve that with oral treatment but far more difficult. continuing IV means pursuing a PORT surgery. with no support coming from the medical system here, this means it would be done in the usa. estimated cost is between $4,000 to $7,000. the cost plus dealing with our kid being put under general anesthetic as an out of country patient is unsettling and unnerving. yet, we have absolute faith that God would make a way, if that ends up being the best option for parker.
the other option? have faith that he's had enough IV and that oral abx would continue to keep him on the road to recovery. have faith that the right combo of oral meds would be enough to penetrate the blood/brain barrier. have faith that ceasing IV wouldn't cause a backward landslide. of course, if he deteriorated on orals, we would move quickly to get a port and re-start IV treatment, however would that lapse in IV be destructive to his over all progress? what if it gave the bugs time to proliferate in his brain again? as difficult as it still is, no one wants to go back to what it has been.
yet, a decision must be made.
that is the weight that sat with me yesterday as i waited for DR H to call. our appointment was scheduled for 1:45pm. it is rare that he is on time - (which is a sign of a good doctor, if you ask me.) he doesn't rush his patients or their appointment. as a result, he is often running at minimum 30 minutes behind. generally by afternoon, it is more like an hour or two. at any rate, i knew yesterday would be a long day of waiting and wondering what the next step would be. and it was....DR H didn't call until 4pm and worst of all - we MISSED his call. our stupid phone malfunctioned. we spent the next hour or so trying to get through to him. finally his receptionist got thru to us and our appointment got re-scheduled to this morning.
needless to say, by that time, i had just had it. the stress of the day wore me down and i was grumpy, jumpy and over emotional. i ate my way thru a bowl of ice cream, 3 oreos, 2 pieces of rocky road fudge and half a bag of licorice. not kidding. i was comatose by 7pm. perfect. just what i was after. even still, the tension still hung thick in the air. and the kids picked up on it. parker knows what options are being weighed. he's upset. he's so done with it all. after an initial angry vent, he went into shut down mode and just got really, really, really quiet. graham was on edge and dis what he does to cope - work. he buried himself in his office until 2am. great for the work video he's making not so great for his energy levels. avery had a major 2 hour long meltdown. clearly, it was not a stellar nite.
thankfully, the phone co-operated this morning and DR H was only 15 minutes behind schedule. my appointment was fairly straight forward. and the next step in my journey was fairly clear and a plan of action was quickly forthcoming. (will update that tomorrow)
parker, on the other hand, not so simple...and we still don't know what our next step will be. DR H really felt he needed a few more days to mull things over. we don't at all feel that he doesn't know what to do. we believe he does. he just wants to take time to weigh all the options and make the very best plan of action. stopping IV treatment is not remotely ideal right now but he is trying to figure out if there is anyway he can work around it with oral treatment. if not, then we will have to move forward with getting a PORT. the weight of this decision weighs heavy on all of us. there is a lot riding on this and a lot of pressure bearing down on DR H. even tho' it sucks to have the unknown hanging over our heads for a few more days, we are so thankful that DR H is not willing to rush to make such a critical decision.
we expect to know what the next step on this journey will be by monday evening. we'd appreciate your prayers for wisdom for DR H this weekend. seeing as i've depleted our sugar supply, i shall face this weekend with full mental and physical awareness. therefore, we'd appreciate prayers for peace to reign in our hearts and home.
in parting, i will close off with this prayer a friend, who is in the thick of her own fight with lyme, sent me this week. it's been a source of tremendous comfort and a much needed reminder to keep trusting.
"COME TO ME, and rest in My loving Presence. You know that this day will bring difficulties, and you are trying to think your way through those trials.
As you anticipate what is ahead of you, you forget that I am with you--now and always.
Rehearsing your troubles results in experiencing them many times,
whereas you are meant to go through them only when they actually occur.
Do not multiply your suffering in this way! Instead, come to Me, and relax
in My Peace. I will strengthen you and prepare you for this day, transforming your fear into confident trust."
from where i sit the next step in our journey appears unclear.
during the 7 day trial, we did see a return of psychiatric episodes. they were mild but they were undoubtedly there. they came at the 72 hour mark of restarting this particular iv drug. this most likely means one thing - parker still has bugs in his brain...and IV treatment is his best shot at eradicating them. and yet, due to collateral vein complications, his PICC line must come out. we've kept it in (nearly 4 months) for as long as we can.
i just want this all to be over. i want it to end. all of it to end.
last week parker hit a wall. he cried. he rarely cries. he rarely even complains. his birthday was in december. he was too sick to have friends over for a party. again. his big plan for his special day was to go for lunch with my dad. he was really looking forward to that. yet, he was too sick and in too much pain to even do that. his birthday lunch and dinner were eaten on the couch.
it was heartbreaking for graham and i. we went to bed with heavy hearts. the next morning, i mentioned to parker how i was sorry that he'd had a bummer day. with a puzzled look, he replied, "what do you mean mom? i had a great day."
gulp. he is an "old" 12 year old. i learn a lot from him.
yet, we all have our breaking point. and last week, he reached his. he came into my room and lay down beside me. even tho' he didn't say anything, i could sense his sadness. it was emanating from him. at first giant, silent tears slowly rolled down his flushed cheeks. yet, he still quietly lay there, trying his darndest to remain strong and brave. "there is strength in tears." i whispered. "it's okay to be sad, buddy. don't hold it in." and then it came. he sobbed for the pain he has endured. he cried out in the pain that he is still in. he grieved for all that has been lost. he vented and gave in to the hopelessness that is only ever a heart beat away. "i'll never get better. nothing helps. nothing changes. i've been sick for over 2 years. this will never end. i never see my friends. i hate taking pills. i'm tired of IV. i hate my life."
all i could do was wrap my arms around him and acknowledge his pain and his fears. yes, it feels like it will never end. yes, it is unfair. yes, it has been too long and too much and too awful. yes, it sucks so bad that it sometimes sucks all the hope out of me too...but there is always hope.
no matter how hard it is to believe, no matter how it appears, this will end. i can't tell him when it will end. i simply don't know. that is one of the hardest parts about this journey. there is no end date to aim for and to hold on to as a beacon of light. will it be 2 more weeks, 3 months, 9 months or 18 months or longer...there is no way to know...we must just hold on even tho' the end is an undefinable, indefinite time frame...we must hold on with no end in sight and somehow hold on to the hope and keep the faith and belief that it WILL end. we have to believe that. we have to hold on to that.
and now we arrive at today. and where we must go and what we must do. and what is the next step.
and i find myself contemplating not great options.
the PICC line must go. that much we know for sure. however, since parker's response to the provocation revealed there are (most likely) still bugs in his brain, then continued IV is the best option. IV most effectively penetrates the blood/brain barrier. it is possible to achieve that with oral treatment but far more difficult. continuing IV means pursuing a PORT surgery. with no support coming from the medical system here, this means it would be done in the usa. estimated cost is between $4,000 to $7,000. the cost plus dealing with our kid being put under general anesthetic as an out of country patient is unsettling and unnerving. yet, we have absolute faith that God would make a way, if that ends up being the best option for parker.
the other option? have faith that he's had enough IV and that oral abx would continue to keep him on the road to recovery. have faith that the right combo of oral meds would be enough to penetrate the blood/brain barrier. have faith that ceasing IV wouldn't cause a backward landslide. of course, if he deteriorated on orals, we would move quickly to get a port and re-start IV treatment, however would that lapse in IV be destructive to his over all progress? what if it gave the bugs time to proliferate in his brain again? as difficult as it still is, no one wants to go back to what it has been.
yet, a decision must be made.
that is the weight that sat with me yesterday as i waited for DR H to call. our appointment was scheduled for 1:45pm. it is rare that he is on time - (which is a sign of a good doctor, if you ask me.) he doesn't rush his patients or their appointment. as a result, he is often running at minimum 30 minutes behind. generally by afternoon, it is more like an hour or two. at any rate, i knew yesterday would be a long day of waiting and wondering what the next step would be. and it was....DR H didn't call until 4pm and worst of all - we MISSED his call. our stupid phone malfunctioned. we spent the next hour or so trying to get through to him. finally his receptionist got thru to us and our appointment got re-scheduled to this morning.
needless to say, by that time, i had just had it. the stress of the day wore me down and i was grumpy, jumpy and over emotional. i ate my way thru a bowl of ice cream, 3 oreos, 2 pieces of rocky road fudge and half a bag of licorice. not kidding. i was comatose by 7pm. perfect. just what i was after. even still, the tension still hung thick in the air. and the kids picked up on it. parker knows what options are being weighed. he's upset. he's so done with it all. after an initial angry vent, he went into shut down mode and just got really, really, really quiet. graham was on edge and dis what he does to cope - work. he buried himself in his office until 2am. great for the work video he's making not so great for his energy levels. avery had a major 2 hour long meltdown. clearly, it was not a stellar nite.
thankfully, the phone co-operated this morning and DR H was only 15 minutes behind schedule. my appointment was fairly straight forward. and the next step in my journey was fairly clear and a plan of action was quickly forthcoming. (will update that tomorrow)
parker, on the other hand, not so simple...and we still don't know what our next step will be. DR H really felt he needed a few more days to mull things over. we don't at all feel that he doesn't know what to do. we believe he does. he just wants to take time to weigh all the options and make the very best plan of action. stopping IV treatment is not remotely ideal right now but he is trying to figure out if there is anyway he can work around it with oral treatment. if not, then we will have to move forward with getting a PORT. the weight of this decision weighs heavy on all of us. there is a lot riding on this and a lot of pressure bearing down on DR H. even tho' it sucks to have the unknown hanging over our heads for a few more days, we are so thankful that DR H is not willing to rush to make such a critical decision.
we expect to know what the next step on this journey will be by monday evening. we'd appreciate your prayers for wisdom for DR H this weekend. seeing as i've depleted our sugar supply, i shall face this weekend with full mental and physical awareness. therefore, we'd appreciate prayers for peace to reign in our hearts and home.
in parting, i will close off with this prayer a friend, who is in the thick of her own fight with lyme, sent me this week. it's been a source of tremendous comfort and a much needed reminder to keep trusting.
"COME TO ME, and rest in My loving Presence. You know that this day will bring difficulties, and you are trying to think your way through those trials.
As you anticipate what is ahead of you, you forget that I am with you--now and always.
Rehearsing your troubles results in experiencing them many times,
whereas you are meant to go through them only when they actually occur.
Do not multiply your suffering in this way! Instead, come to Me, and relax
in My Peace. I will strengthen you and prepare you for this day, transforming your fear into confident trust."
1 comment:
I really feel for you, but at the same time I am so jealous. You actually have a doc who 1)believes you/Parker can get better 2)makes treatment suggestions -- the patient doesn't have to research and come up with new med combos all on their own 3)will do IV meds 4)doesn't give up on complicated patients 5)looks for other causes of illness besides just tickborne diseases
You may remember that I sent you an email several months ago when Parker had the rash and fever and I suggested the possibility of Rocky Mountain Spotted Fever.
After hubby's 5th high fever and ER and hospital visit in 2011 he ended up having his PICC line pulled and we haven't found a doc yet who can or will replace it. We had to change LLMD's 3 times in 2011 and although we like the current one we feel like we are pretty much on our own.
I recently started hubby on horse wormer and a new herb from Africa for his intractable babesia -- that is on top of the doxy, lariam. malarone, flagyl and art he was already on.
Plus he has recently had positive titers for typhus and 2 forms of ehrlichia. His bloodslides are the worst they have ever been showing 2 bloodborne parasites and a 3rd pathogen attacking the WBC's -- but no one can even identify any of the species.
So after 11 years of illness and over 8 years of treatment we are beyond frustrated.
Hubby is so much better -- but 1 1/2 days off babs meds is all it takes for the dry heaves and Parkinsonian tremors and myoclonus to start acting up. At least the seizure-like episodes from bartonella really seem to be gone.
Sorry to vent. But from hubby's experiences I would say full steam ahead and get the port and if you are really lucky Parker can actually beat this and get on with his life.
Bea Seibert
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