Here come the MIB(G)

Thursday morning came and Oliver was prepped for the MIBG.  This test was designed at UM (my aunt actually helped develop it when she worked in the nuclear med department) and is used world wide specifically to look for tiny neuroblastomas that may have been missed on other scans (CT, MRI, ect).  We had steady confidence that the results would be negative and were very grateful that my aunt knew the CRNA who would be part of Oliver's scan.  Mary was awesome...she is a mother and really helped set Oliver at ease (even before the sedatives were on board:) before and after the scan. Taylor and I had been able to  grab a nap while he was in the scan and felt so much better for it.    However, the nap ended quickly when the pager went off...since they knew us, we were able to go down to the PACU even before Oliver woke up.  When he did wake up, he polished off a bomb pop and we were sent back upstairs to await the results.

The rest of the day, Ollie was pretty tired and very irritable.  We would find out a week later that a handful of sedatives and all narcotics can amplify Ollie's symptoms and increase his irritability.  (Needless to say, there is now a note in his file following another incident with a narcotic when they placed his port this week.) Taylor and I both have a list of these counter-indicated drugs in our phones now so we will always have them at hand.

I forgot to mention one of the things that made our stay a little easier....the HOSTS!  Lynn and Devin were our unit hosts and really went out of their way to make us feel comfortable.  Lynn "got" Taylor and they had a good time trading humor.  These ladies are non-medical personnel and are there just to help meet the needs of patients and parents.  Sort of like unglamorous concierge.  The other ladies that really made a difference for Oliver were the Child Life Services crew.  They brought Oliver a pile of books, crayons and some stickers on his first day on the floor that really helped pass the time.  They also have a program called Hope Beads where the kids get a personalized dog tag and beads that correlate with the procedures they have while inpatient.  It is a coping technique for the older kids, to help them tell their story when they get home.  In our case, Oliver liked putting the beads on and off the string:)  We also got gifts from the Giving Library (I think they GAVE us a book a day to take home with us) and the peds anesthesia teams gave Oliver a toy every time he had a procedure.  There was even a company that came by with games for every kid!  We came home with a bag full of loot thanks to generous people and companies who donate to Mott.  If you or anyone you know has been a part of that generosity, THANK YOU!

When you think you've asked enough questions....

ASK ONE MORE...

Wednesday morning, the nurse and her student came in to give Oliver eye drops.  First, we asked for what purpose? (they said to protect his thyroid during the MIBG) Second, we asked why would something for his thyroid be in an eye drop?  (they said they had asked their supervisor because they thought it was strange too, but were told it was possible to have different delivery methods) We asked one more time and they were confident...so in his eyes they went.  Oliver did NOT like them one bit...

Taylor's parents came to the hospital to give us a little break.  I needed to stop in at work and sign some papers that I had "left for Monday" when I finished work the previous Saturday and desperately needed a shower.  My mom swung by the front doors to pick me up and take me home.  I took a quick shower and hurried around to gather up some more clothes.  We had just jumped back in the car to head to Canton when my phone started ringing.  It was Taylor's parents...they were in the hallway outside Oliver's room.  They tried to sound calm, but they only knew that some doctors were in the room with Taylor and Oliver and that Tay had asked them to call me back quickly.  I did my very best not to lose my cool....we had no idea what was going on.  My mom dropped me back off at the front doors and I did that kind of skip/walk/run thing when you are trying to look calm, but aren't, to the elevators and up to the 12th floor.  When I arrived, Chris and Ernie were still in the hall...Oliver was crying loudly on the other side of the doors...I went in to find two doctors examining his eyes.  They quickly declared that Oliver's eyes were fine and that no damage had been done.  All I saw was my baby, soaking wet with yellow-orange dye streaking down his face.  

Apparently, shortly after I left the Posse figured out that the drops had been ordered incorrectly, or the pharmacy had tagged it wrong... who knows what really happened.  I guess that is for the incident report to figure out.  But, the intern came racing into the room to start flushing Oliver's eyes...Taylor said it looked like Oliver was being waterboarded....all the flush was running over his nose and into his mouth.  Thankfully, Taylor had the presence of mind to suggest tipping his head back and running the flush through his eyes and over his forehead instead.  The docs I had seen were opthamologists who came to ensure that his retinas, corneas and other eye anatomy were free of any lawsuit invoking damage.  (we are not litigious people, so they were probably in the clear anyway...)  Thank the good Lord his eyes are perfectly fine and the only harm was emotional distress.  Once he got himself positioned on my chest he fell quickly asleep.

Needless to say...we were right to question, should have continued with the questions...

and mama should never leave the baby!  (although, dad handled it like a champ) And, we feel confident it won't happen again to any other kiddo.

**by the way, the MRI was negative and uneventful.  One of my aunt's friends works in the department and was one of the docs who read Oliver's scans...he and the assorted anestheia personnel that we are also linked to have been asking for updates ever since he had his scan...so awesome to have extra eyes and ears around you at the hospital.  They took good care of Oliver*** 

The Posse

Dr Leber and his merry men (and women)

C.S. Mott Children's Hospital is part of the University of Michigan Health System...a teaching hospital.  We discovered what that truly meant on Monday morning April 8th around 10 am.  A knock on the door woke us all up from an early morning nap. (Oliver had realized at about 5 am that he was not in his own bed and he was NOT a fan....)  On the other side of that knock was a group of about 12 Doctors- interns, residents, fellows and an attending- plus a nurse or two.  I'm fairly certain they threw around the terms opsoclonus (eye movement) and myoclonus(muscle jerks) and ataxia (loss of coordination) as early as that first morning of rounds, however at that point it was more in the way of describing the symptoms than a diagnosis.  Dr Leber (the attending, i.e. the man in charge and also the on-call neurologist who had been consulted on Sunday evening) had spoken with an expert in opsoclonus from LA who was advising him on the eye movements.  They also tossed around words like neuroblastoma, listeria, encephalitis, and meningitis... we still felt a sense of peace, but those are big scary words to report to the anxious grandparents. 

A full body MRI was first on the list of "next steps".  This would further rule out a mass that might have been missed by the CT scan on Sunday night.  Because of the number of departments that needed to be coordinated and the length of time needed to complete a head to toe MRI, it was scheduled for Tuesday.  So, Monday was spent waiting around and receiving IV antibiotics due to elevated white blood cells in his CSF (cerebral spinal fluid).  Oliver was still up for playing and in a pretty good mood...Nana, Mimi and Papa Ernie all came up for a visit and stayed for dinner. Oliver enjoyed them but was, as described by his specialist last week, a velcro child.  He stuck to me almost around the clock.  

We also found out that we would be inpatient until at least Thursday afternoon since that was the day he would have the MIBG  (no, that does not stand for Men in Black (rated) G, but thinking that sure did help me remember what that stupid test was called)....more on the MIBG later.

(almost) a week at Mott Children's Hospital

The ED

 (or ER...depending on who you ask...)

Oliver's symptoms definitely stumped the ER docs.  They got quite the run for the money from Taylor and I.  We questioned EVERYTHING they wanted to do....tell me WHY you want to run a CT scan on my 2 year old, why a lumbar puncture, X-rays, blood work....WHAT ARE YOU LOOKING FOR?  Typical causes for OMS were what the docs were instinctively looking for.  Viral infection (recent or current), signs of a mass or neuroblastoma.  Thankfully, the Irish attending physician in the ED was able to keep up with Taylor and clearly explained the why of the what.  We allowed them to run their tests while we, along with a very few people who already knew what was going on, prayed for our little man.  As was our prayer....nothing was found.  No reason for the symptoms that we were still seeing.  So, following the negative chest x-ray, abdominal ultrasound, head and abdomen CT, and pending blood work and lumbar puncture, we were admitted to 12 West.

12 West

We were greeted in our room by a familiar face, Nicci Andryc.  I've known Nicci for years-  her sister, Erica, and I were great friends through high school and now they are both nurses at U of M.  Nicci was the charge nurse that *early* morning and went out of her way to make us feel as comfortable as is possible.  Due to the anesthesia from the lumbar puncture, Oliver actually slept in the crib for a few hours that night.  Taylor slept on the couch and I slept in the recliner....we assumed it would be a short stay........the next day we met the neurologist and his posse....

the beginning

This was one of those things that happens to other people.  One of those stories you see on Mystery Diagnosis (no, really youtube it), Dateline, or something like that.  We are telling Oliver's story for two reasons.  First, his diagnosis, OMS (omsusa.org), is extremely rare and very often, misdiagnosed.  Second, we know that Oliver will be victorious through our faith in Jesus and in God's ability to move miraculously in our lives to heal completely.

On Thursday April 4th, we spent the day at Mimi's (Taylor's mom) house.  On a trip to Target, we were looking at the toys and noticed that Oliver seemed to startle excessively.  Over the last couple of days he had been walking funny, with his arms bent at the elbows and drawn back a bit.  We attributed this to a growth spurt and Oliver's getting his balance figured out again.  None of this caused us any concern at the time.

On Saturday April 6th, while out to dinner with my parents, my mom mentioned that she had seen Oliver's eyes move back and forth quickly and repeatedly that day.  Taylor and I discussed it, but Oliver seemed completely himself otherwise- happy, cheerful and full of spunk.  So, we decided we would keep an eye on him and visit the pediatrician on Monday.  

Sunday morning, April 7th, Oliver seemed a bit shaky, but again, otherwise normal.  We visited a new church and I asked the nursery worker to keep an eye on him.  When we picked him up, she said he seemed okay, but maybe a bit tired.  Since we had woken him up from a nap to go in, we dismissed it.  Later that day, Oliver was running toward me and I watched his eyes roll back into his head.  He came to a complete stop and started crying.  At this point, Taylor and I regrouped and decided to call the nurse line for our doctor.  They sent us to the ER.  We took him to U of M Mott.  

Writing this down, it sounds like we ignored a lot of things, but in the moment...none of it seemed all that obvious, especially since Oliver was completely normal in his behavior.  When questioned, we were also able to come up with a few other signs-  he hadn't been sleeping well at all for about a week, waking frequently.  Taylor also noted his gross motor skills seemed to have declined a bit, he was unable to hit a golf ball or baseball as well as he had several weeks prior.  

It has taken me a few weeks to begin this blog...time with my hands free is limited to after Oliver is in bed.  And, he only began sleeping in his own bed again 4 night ago.  I will do my best to update with what has progressed since our 7:30 pm arrival at the Mott ER on Sunday the 7th tomorrow night.  (and hopefully we will have our treatment schedule finalized by then).

Thank you for choosing to support our family with your prayers!  We are so very grateful and would ask that you be in agreement with us as the Word teaches (Psalm 133:1-3). 

We are praying for the complete removal of every symptom that Oliver has been experiencing. Our prayer and belief is that Oliver is healthy and whole and his body functions perfectly from the top of his head to the bottom of his toes, the way our Creator intended. Oliver has already been healed by Jesus' stripes on the cross (1 Peter 2:24, Isaiah 53:4-5) and we thank you again for joining us in these prayers! 

love- taylor, katie and oliver

(Specific thanks to Marcus and Erin Crosby who wouldn't take no for an answer--they softened us up with cookies first and then brought by some delicious stuffed shells and texas sheet cake!)

These are some recent pictures of Oliver- the oldest one was taken at his 

birthday party in January.  The comments are from his perspective:)

here i am trying to catch the kite while papa randy was flying it for me on easter...
might have been easier with my eyes open.

me and nana on easter

my mimi and papa ernie playing games with me at lunch one day.
please excuse my shirt...daddy dressed me

this is my 2nd birthday
mimi, aunt ashley, addy, mommy, me, brutus and papa ernie

me at the range with daddy a few weeks ago.
daddy says i was hitting them pretty well!

playing in the sandbox at mimi and papa's house.