Friday, June 7, 2013

when time stops for a bit

sometimes time seems to halt and it's like god's hand scoops you up.  you go along for the ride but you feel ultra sensitive and out of your comfort zone. it feels like home when hard things happen.  a strange familiar feeling. does this make sense?

i need those things in life that make me stop and say what are you doing and where are you headed. are you going good places? are you taking your kids with you or are they dragging behind.

my heart has been in a million different directions since this all started with easton. broken, mended, shattered, torn, guilt ridden, bursting, overflowing. all of them. i love my family. i am grateful to love fiercely and to be loved fiercely.

our first miracle was when our pediatrician gave us his cell phone and told us we could text and call. there were countless nights he kept us out of the ER talking us thru calming easton down and getting his pain under control.  he stayed up with is, hour by hour, determining he was okay. that's organic medicine.  that's why scott m went into medicine. he saw a grandpa and uncles practice organic medicine. he saw healing. it's no corporate office, it's no billing and payment, it's house visits, it's charity, it's healing.

(disclaimer to our medical friends, my spelling is not accurate but i refuse to google our diagnosis for fear of being institutionalized, work with me?)

then along the way, i just happened to ask our allergist while i was doing a baseline with rowan for his food allergies (i could tell they had shifted because he had constant eczema since december that wouldn't go away)a simple question. i just had a feeling.  it is uncharacteristic of me.  having scott work in the medical field, he gets a lot of questions from people.  one man cornered him in the hall at church and grilled him about his hemorrhoids. a lot of people call and ask if he can tell if they have a broken bone over the phone. they are really seeking reassurance from someone who spent a lot of years in medical education if they are going to be okay and what they should do. on this particular day, i excused myself profusely to our amazing, wonderful, brilliant allergist who is also an immunologist, for the question i was going to ask about easton.  i had noticed on rowan's new patient questionnaire a line about frequent recurring strep throat.  it was my first nagging question to the pediatrician when this all started. easton's had strep throat 6 times in 12 months. the immunologist said it was absolutely a sign that something was off and would i be willing to include him in easton's care. he gave me a list of blood work to take to our GI appointment. it took nothing short of hi-jacking the GI staff at primary's to get an appointment. our pediatrician called for five days straight to the emergent on call dr. for five days. straight. no phone call back. these two months have led to so much disappointment with the GI dept at primary's. i would get angry, angry because easton was getting sicker and sicker.  being the primary care giver and not able to relieve pain and suffering no matter how much i googled or racked my brain was torture.  primary's tells us it's a six month super bug. wait it out.  they did a CT w contrast which reassured us that there was no life threatening problem. the blood work came back and was reviewed by dr jones (the allergist/immunologist) and he immediately sent me for more blood work to check easton's eosinifils. this is a measure of allergic response in the blood. he also did a ton of skin tests and we found he was allergic to a number of things outside and a few foods. the blood work came back and his eosinifils had doubled from 800 to 1600.  so high that dr jones called primary's and told the nurse we needed a GI scope immediately. not in two weeks. as soon as possible. they got us in 5 days later with another GI willing to take it on. At the scope they were looking for the presence of these eosinifils in the esophagus. dr jensen reviewed his findings and said there was no significant swelling and he had a very healthy tract.  we were devastated.  he told us with the presence of the collection of enlarged lymph nodes discovered in the gut at the last ultra sound it would confirm the virus theory.  so that day we were on team virus, wait it out even tho none of the medication was helping. we were told the results would take 7 days from the biopsy. i got a call the next day from our GI. he told me that the rate of eosinifils was high and that we needed to be treated by the allergist but that it wasn't at all explaining the pain easton was in.  he told us to go back to our pediatrician and general surgeon who performed the umbilical hernia repair in april and to do an exploratory lap. sigh. we were off team virus and feeling like we were at square one with an incidental finding.  we were so depressed. the next morning i had an appointment with dr jones to review the results.  to diagnose with eosinophila it takes a score of 20, 50 being severe.  easton was 100+. i was telling him how i felt so deflated that this didn't explain his pain.  he got stern with me and told me we had a diagnosis and that it was absolutely the right path.  he assured, calmed, educated, and promised to follow this thru with us. he promised easton he would do everything he could to get him feeling better and this was causing the pain. he wanted us to see the general surgeon the next day to rule out a need for surgery and wanted him to call dr jones the second we were done with the appointment. dr jones called my cell phone on his lunch break and said he had this this nagging feeling we need to do some more blood work. there's a condition that's called hypereosinifila that is hard to pin down and diagnose, but it's serious.  we have to explore it. his rate double in three weeks. it won't change the course of treatment but it changes how aggressive we are. we will get that blood work back in two weeks when we see how the prescribed course of action is going. no surgery. it was the answer we were hoping for. and the last two days, man they feel right. it's that green light feeling that we are with the right people doing the right thing and my burden is lightening up. it feels right. those angels in the last post? i looked up, i made room for them, i listen for them. i can feel them.

what's the prescribed course of action?

a five food elimination diet. we eliminate dairy, eggs, wheat, soy, nuts in any form. an aggressive round of steroids to calm the GI tract down and to see if it improves the eosinifil rate. every time we reintroduce one of the foods, we follow up with blood work and a GI scope. is it chronic or acute? time will tell.  today, he started the steroids which should take 2 weeks to notice improvement. we are praying he responds to it and his rate goes down. please don't google this and talk to me about it.  when scott got off the phone with dr jones this week, he spent the day at the hospitals medical library. he came home solemn and said, "what a miracle that you asked that question. i don't want to think where we would be if we let this go untreated." and so i won't google it. i will take it day at a time.  we have dr jones cell number and his urging to call with any questions.  that's healing. that's organic medicine. today i called the nurses line because i remembered my best friend who had lupus could never go in the sun because of the steroids. i wondered if i should keep him out of the sun. also, someone was telling me a coconut was a nut and i shouldn't give it to easton. i had grandiose dreams of ice cream with coconut milk and oil to fatten him up. dr jones called me back 25 minutes later to tell me what to expect and that the FDA classifies coconut as a nut but it's a fruit and eat away.

we are calorie boosting as he is thin and this condition makes it hard for him to absorb nutrients. his blood work shows his deficiencies. i bought a juicer, with every piece of produce in costco accompanying me home. i'm a mother on a mission.

this is long, it is detailed and erratic but there's a point to it.

i have an inbox full of emails. i have texts waiting to be responded to. i have a phone that rings with concern. we put our pride aside and asked for help. we have prayed for a miracle. loved ones, you are our miracle. it is faith that proceeds the miracle. ours wasn't enough. i can't express the overflowing gratitude that seems to burst from me at times. i have been so touched to see genuine concern and faith expressed for easton. god's hand. we have been on a ride. and this particular ride is slowing down.  i hope i can cultivate and keep this feeling with me. the feeling of hard things and how it reminds me of home. that closeness we feel when we realize that bended knee offered to calm the turbulence is what this life is about. yes, that line my friend jen said from my last post about the lord orchestrating our education, it has imprinted on my mind.  this is our education. it is not a mystery, it is the answer.  thank you from the bottom of our hearts for everything that was offered to receive and be aware of this miracle. love is what it's about, we are forever grateful. thank you!!