i don't even know what to say anymore...and i really don't have the time to figure out what to say.
i really don't. yet, i feel the need to say something. sort thru the tumult of thoughts reeling around in my head. yet here i sit, in the wee morning hours, staring blankly at the computer screen, wondering what to say and where to start. and i just don't know. it's been a gong show here since graham left. a total gong show. and the past 24 hours, we've hit crisis mode. more about that in a minute. but first, i have to say i have been incredibly blessed by the care, support and practical helps from some pretty amazing people. THAT has gotten me thru THIS...this crazy, upside down, sideways ride...this more difficult, more challenging than i ever expected ride i've been on for the past 10 days. has it only been 10 days since graham left? feels more like 100.
i'm sitting here questioning why in the world so much has gone wrong and why couldn't we have been spared some of the crazy challenges that have rolled our way. just dealing with our every day regular stuff would have been challenge enough, so i certainly can't understand why we couldn't have just been spared the additional drama that has occurred. yet, even while i contemplate those thoughts, i recognize that i've been given the strength to get thru it on my own when i had to and i've been given the help to lean on and support of others when i had not an ounce of strength left.
so here i sit, trying to reconcile the collision 2 very divergent schools of thought. on one hand, i wonder why, oh why, oh why have we not been spared some of the crap that has gone on over the past 10 days (or past 5 years), yet at the same time i recognize as bad as it's been, it could've been worse. i don't know what to say about it. i really don't. i could sit here and endlessly try to rationalize it, analyze it or spiritualize it. i could do it til i'm blue in the face - and i would still not understand it. i don't know if i ever will.
sometimes i just wish we could say all the things that are easy to hear
ignore the injustice we see and explain every unanswered prayer
but i'd rather speak honestly and wear a tattered heart on my sleeve
cause in the middle of my broken dreams, redemption is here
i'm still a dreamer, a believer
i've lost my faith in so many things, but i still believe in you
cause you are the answer, the redeemer
i've given up on too many things, but i'm not giving up on you
cause you can make anything new
i don't have every answer in life
but i'm trusting you one day at a time
cause you can make a weak heart stay alive forever
this is where heaven and earth collide
i lift my hands and give my life
this is how my weary heart stays alive
~ the redeemer by sanctus real
maybe once things calm down (they will, right? one day), i hope to share some of the lighter moments and the blessings that have occurred over the past 10 days, but as i mentioned at the start of this post, we've hit crisis mode and would really covet prayer. the past 24 hours, have been difficult, scary and exhausting.
i don't have a lot of time to go into detail right now. but here's the break down:
parker has been on a downward spiral this week.
he began to have some weird symptoms on tuesday morning during his IV infusion...best described as a "funny feeling" in his mouth and very bad pain in his RUQ (like pain he had during gall bladder attack) however these things would be over and done with within the first 5 minutes of infusion starting and wouldn't return at any point during the remainder of the 60 minute infusion. yet, he continued to have them occur with every IV infusion (he's on this IV med every 12 hours). it was weird. he has been on this particular IV med for about 5 weeks now so it didn't seem likely that he would be having any sort of reaction to the drug. but it was odd enough that it bothered me.
i didn't want to be an alarmist but something about it just wasn't sitting right with me. just a nagging feeling that something was off. additionally, he was describing his joint pain as the worst it's ever been. on friday morning, i noticed that his face was very bumpy. however, when he is starting to head into a herx, it is not unusual for him to pretty much start to have these sort of skin changes - his whole body will take on the texture of sandpaper. the bumps are always flesh colored. but i noticed that they were red and he was really weak. again, i just had an uneasy feeling i couldn't put to rest, so i put in calls to both our american LLMDs. and i decided to be as pro-active as possible - which meant dragging him to the lab for blood work even though he felt horrendous. at that point, i was concerned that it was his gall bladder that was acting up again. while we were at the lab, he all of a sudden said, "mom, look at my hands."
there were strange little red dots all over them.
by the time we got from the lab to the van, the spots were on his ears. and within minutes, they were spreading like wild fire.
ears, face, neck, arms.
i thought about driving him straight to the hospital.
but it was nearing rush hour...on a friday and well, i didn't want to panic. i wanted this to be nothing. i wanted to keep the situation as calm as possible. by the time we got home, he was running a fever, i knew he needed to be seen. still hoping this was really not anything to be too concerned about, i opted to take him to the walk-in clinic by our house.
the doc there said it was a non-specific rash. most likely it was a virus or maybe he had mono. i asked him about it being some sort of delayed reaction to the IV abx. he said no. that kind of thing is highly usual and that it would be safe to continue running meds as is. if however, he got worse, than come back to clinic or go to the hospital. but he assured me that it was probably not anything to be concerned about.
we went home
i just could not shake the feeling that this was "nothing" to be concerned about and that the rash had "nothing" to do with the IV meds
i did NOT run his IV meds that night
he continued to run fevers that nite and feel progressively sicker.
the next morning (saturday)
when he woke up, he was worse.
a hundred times worse
the rash was very red and very pronounced and was every where now. even on the palms of his hands and the soles of his feet. there was NO WAY this was still a non-specific rash
i took him back to the clinic.
i now put in phone call to dr h's cell.
i tried to remain calm.
i told myself it could be fifth's disease or hand, foot, mouth disease.
but we've had all those rip through our house before and this really did not look anything like that. it was just different.
there was different doc at clinic
as soon as she walked into the room, the first words out of her mouth were,
"that looks like DHS - drug hypersensitivity syndrome."
my heart hit the floor
that it would be that, had been my fear. i had already read about it, while rare, it is very serious.
additionally, parker's lab work revealed elevated liver enzymes and low platelet counts. DHS is characterized by rash, fever and organ involvement. as well as arthralgia, myalgia etc.
the best defensive against, DHS, is to immediately stop the drug that is suspected of causing the reaction. the sooner it is stopped the better the prognosis. i can't even begin to imagine what kind of a pickle we could have been in had i gone home the night before and continued to run his IV meds.
aside from immediately stopping the suspect drugs, really the only treatment is supportive care of the symptoms. benadryl. detox meds. IV fluids. pain management.
the doc said we could go home, start all the supportive measures and closely monitor him. if the rash got worse, his fever got higher or he started to develop rash on his lips, mouth, eyes etc than he needed to go to hospital immediately. DHS can (very rarely) progress to a rare syndrome called stevens-johnson syndrome.
we went home
then dr g from dr h's office called (he's the doc on call this weekend)
and he told me he wanted me to take parker to the hospital immediately. DHS is not something to mess around with.
i really balked at that (anyone who's read this blog for any length of time would know why.) and i asked dr g if it was absolutely imperative to immediately take him to hospital or could we just devise a strategy to continue supportive care at home?
he agreed i could keep him at home for time being if i monitored him every 1-2 hours through out the night. and if at any time, anything seemed to be getting worse, especially his skin, i had to immediately take him.
i'm already beyond exhausted but i would rather be at home not sleeping than at the hospital not sleeping.
it is morning now. his pain is horrendous. the rash on his face has improved. his arms and legs are worse but the rash is not blistered which is a good sign. i've spoken with dr g again. for the time being, we're staying put at home. there does seem to be some improvement so we're hopeful the worst is behind us. we are still on stand-by and the possibility of having to go to hospital is still a very real possibility.
i don't know what else to say. i'm exhausted. i don't know how i'm continuing to function. i have thrown up every single day since graham has been gone. often multiple times a day. aside from that, i'm fine. i have to be. pray for us. i spoke with graham several times last night. it is hard for him to be so far away. parker's condition continues to be ummm, unstable. i am on pins and needles. we are taking it minute by minute. i am closely monitoring him, while i am hopeful the worst is behind us, but i don't know. i can't say. pls just pray. i will update as i can.