Surgery at CCH July / Aug 2012

Ryan and Sarah came along for moral support

Their favorite thing about traveling is the hotel pool.

 

Morning appointment followed by our first visit to the Cincinnati Zoo.

 Emma's discovered a new "can't live without":   Cheesecake Factory!

Her favorite is "30th Anniversary"   

Emma had her procedure and was admitted for an overnight stay.   There was one small pull out couch, twin size at best.   Ryan and Sarah joined me on the couch for this adventure in "breaking Mom's back!"

Emma had a PH probe of her belly, along with some cardiac testing getting ready to clear her for additional surgeries.   Bored, but feeling fine.

Good Morning, CCH

We first arrived at Cincinnati Children's Hospital 5 minutes before we were supposed to at 7:40am this morning for our appointment.   In the elevator we rode with a Mom and her 10ish year old son, said our polite "hellos", and coincidentally headed for the same place.    Emma, Sarah, and I had a seat in the kid friendly but sterile feeling waiting room.   The other Mom walked up to a self check in kiosk and started inputting her info.    I sit and observe, knowing that learning the drill at a new hospital helps things go smoothly.   There were 3 check in windows with name tags, computers, the whole works sitting empty.   Why have someone arrive 15 minutes early when we will then get there before all the staff?   After attempting to do my own kiosk check in and being told "unable to process, see a staff" I had a seat to wait, and wait, and wait.   We watched the half awake registry clerk don a glove, grab some wipes, and proceed to wipe down her entire work area.   I am glad CCH is conscientious about germs and preventing them from spreading, but why aren't the staff arriving before the scheduled patients arrival?   After watching her half heartedly wipe the important things (like the pen, electronic signature pad and pen) and vigorously wipe her keyboard, she proceeded to stand and wave a clipboard at her work area to expedite its drying.   Ten minutes later and after asking her co-worker to use her comb, we sit and wait, not once did she acknowledge our presence or say "I'll be right with you".    Fortunately, I was too tired to get flustered or impatient.   She calls me to the window, we get Bean checked in, and sit back to continue waiting.   Our 7:45 arrival for our 8am appointment involved waiting until 8:20 in the lobby and 8:45 in the room. 

The first person to greet us in the room is an SLP.   She comes in and hands me a clipboard with forms to fill out.   Mind you, I had spent at least an hour on the phone with a nurse who input Emma's extensive medical history into their charts, but no - time to fill them out again.   It's not easy to remember when and what happened specifically for each surgery.   Dates, docs, procedures take up so much space in my head, but when you've already waited an hour to see someone your minds hard drive tends to be on slow upload.    I could continue with this part of the day, but it would be nothing but more frustrations with people popping in, asking for more forms, and telling me someone would be right back to help.

Eventually (after 9am) we get to the meat of the appointment.   A wonderful nurse comes is and introduces herself (the first one to address Emma before me) and asks who Sarah is.    Said wonderful nurse (let's call her Jan) then makes some nice humorous comments about 10 people before her coming in and pestering us and lightens the mood remarkably.   She proceeds to spray a numbing agent in Emma's nose to prep her for her scopes.

Jan takes us down the hall to a procedure room decked out with every piece of equipment ever invented to assess, record, and replay anything to do with vocalizations.    To this point, despite having seen 10 people, there is no mention of the illusive doctor or when we should anticipate his arrival.   Jan takes a back seat as the SLP (who I am not overly impressed with) starts to talk to Emma about what she expects her to do.   Jan has already made mention that she knows how to deal with "determined" kids as I warned her about Emma's lack of exuberant participation with awake scopes in the past.   Jan was relieved when I told her I anticipated she would need to use a  "stern firm" tone if Emma started to resist.    She said that would be no problem, as she is the Mom of several teenage boys.

Jan wonderfully handled Emma and her failed attempt to stall.  Jan immediately told Emma "you can't fool me, I've seen better stall tactics than that!   Let's go girlie, the sooner you cooperate the sooner we can get this done."    I DO appreciate a nurse who tells it like it is!   With Jan's insistence that Emma cooperate in a timely manner something amazing happened.   Emma cooperated, in a timely manner!   Not only did it go well, it went so well that Emma actually giggled when the camera was down her throat.   At some point in this story, the doc had slid into the room.   No introduction, no hello, just jumped in and took over.    If he weren't young and fairly attractive there would be an additional paragraph venting about the doc.   Good thing he shortly after redeemed himself and impressed me as well.

We know now that he has seen several patients (dare I say many) who have histories very similar to Emma's.    It was nice to know she is not the only kid in the US who has a voice like hers (or an airway like hers).   He confirmed the false vocal cord will need to be removed and that she will indeed experience "significant vocal changes" when that happens.   He is not overly optimistic that her vocal cords will ever function and thinks as she heals and starts to try and speak again that she will again develop a flap of skin (false vocal cord / vocal fold) that she uses to speak.   It may again obstruct her airway in the future, but it's a "wait and see" moment.

We finally got to leave after having Emma's voice recorded as a baseline for future comparison.     There was no, "thanks for coming, nice to meet you, kiss my butt" or anything said to us, just "you're all set.  Bye".    No paperwork to take to the front desk, nothing to take home except a copy of the release they wanted signed to allow for Emma's data to be included in a clinical trial.   The majority of the appointment felt totally odd.  

In contrast to the dead quiet we found when we arrived that morning, as we departed the hospital was now crawling with people.   Adorable, cute kids everywhere.   Kids in some of the fanciest wheelchairs I've ever seen, bald kids that looked to be getting chemo, adorable micro babies in strollers with Apnea monitors and oxygen tanks.   The hospital was now overflowing with life.

I am left to wonder if my first impression was altered as it seemed like a ghost town when we arrived, there was no one at the security/information desk to "give you the eye" as you walked by.   No one (timely) at the check in desk, no good mornings or standard greetings from any staff.   If it weren't for my observations of all the wonderful kids on the way out, I wonder what impression I would be left with.

It was a long drive down, a long drive home.   At about 9:40am the pilot that was scheduled to return us home called and left a voicemail saying there would be no flying due to the weather.   Not only was I going to have to drive, he said I would be going through some heavy duty thunderstorms.   He was right.   Sarah kept me company and made a super co-pilot as Emma curled up with a blanket and slept through one of Nature's more impressive storms.   Not too far North of Dayton the weather cleared some and we had an uneventful albeit cloudy remainder of the drive.

We return to Cincinnati next Monday for another 7:45am arrival at the hospital on Tuesday.   Let's hope someone finds it in their heart to say "good morning" when we arrive.

Giant Windmills on the highway

View of Cinci from the room at the Radisson.   NEVER again, awful location just by the highway.  Nothing but Jake Brakes all night!

First Cincinnati Trip

From FB:   We are back from Emma's first appointment with a specialist. She was seen this morning by a voice doctor and an SLP. He performed two scopes of her throat, having her speak, drink, and eat while watching how her false vocal folds react. She did an amazing job and followed directions very well. It was uncomfortable enough that she had tears rolling down her face but she still participated fully and with a positive attitude!  
We were unable to fly home today as there were thunderstorms in the region. We were going to leave the van there to use next week, and fly down again on Monday for her upcoming appointments. She meets next week with 5 more specialists who are going to perform outpatient and inpatient testing. When we are done with these appointments we will have a treatment and surgical plan and be on the schedule for her first “big” surgery.

The hotel was right next to I-75 and it was very loud there due to the heavy traffic. I had a restless night caused by the noise and worrying about oversleeping for her 7:45am arrival at the hospital. We ended up taking an unplanned tour of Cincinnati on the way to the hospital, we saw a few very quaint neighborhoods! Fortunately, I had allowed an extra 15 minutes just in case.

Thank you all for your support of our precious Bean, she is a blessing to us all and after her continual struggles is primed to do amazing things in her life!

Blessings

7/20/2012

It has been a tough day for America.   The horrific news that someone else has senselessly taken so many lives has been all that's been on the news all day.   Ryan and Emma weren't home, so I got the difficult task of trying to explain to Sarah how someone "snaps" and goes "bonkers" enough to feel they need to go kill strangers.   She intently watched for updates, expressing her grief for all those people who have loved one's tragically taken away from them.

Watching how sensitive my daughter is makes me weepy and squishy.   It is hard to see her innocence disappear with each year she lives.   I only wish we could protect our children from the horrible atrocities that surround us here on Earth.   Wishing for comfort I turn to thinking about what blessings we have been given, trying to focus on the positive.   Each day I make it a priority to identify the good in the little things.    Yesterday as we got the much needed rain, I made sure to vocalize how grateful I was to get rain.  When the rain missed us but was falling somewhere else close to us, I made sure to vocalize that we are still fortunate to be getting rain on the crops that provide us food and that those people who were getting the rain were likely very grateful it was raining on them.   When my children observed some challenges we had recently on vacation, I made sure to reinforce the fun things that happened despite the struggles.   It is so easy to overlook all the blessings we receive each day, I hope you all take a moment to identify the little things and how fortunate we all are.

I carry a great deal of guilt with me pertaining the early arrival of my trio.    For years I have struggled with the "what ifs" that come along with having micro preemies.   It seems there was something I should have done to prevent them from coming 14 weeks early.  With Emma's reoccurring medical issues, the guilt reemerges and seems to consume me stifling my happiness and joy.   What could I have done to prevent her from having to pay for "my" mistake?   It isn't fair that she has to continue to deal with this, that it will be something she has to deal with her whole life.  I would like to think I am smart and that I am logical.   The rational side of me knows that we are blessed with the outcome we have, that all three are alive and overall "normal" kids.   The angry side of me wants a miracle to fix it all, or to somehow take her challenges and take them on myself.   It takes a lot of strength to do all that I do to make sure my family gets all they need, but that is nothing compared to the strength it takes for an 11 year old to continue to graciously endure all that life has given her.   When people ask how I do it, I always try to make sure they know I don't do anything any good Mom wouldn't do, that it is Emma that needs the credit for being brave, strong, and stubborn.

Hearing the accounts of the survivors from today's shooting brings me out of my self wallowing for awhile and reminds me that no matter what happens, things could be much worse.  Knowing what so many grieving people have to endure actually bolsters my ability to continue to fight for my daughter.

We're off!

We are all set to fly out on Monday with Angel Flight.    Interested to see how teenie the plane is, kinda nervous to fly in a little plane at low altitude.   For sure it is a new experience for both of us as Emma has never flown!

Emma's story will be on Newschannel 3 on 7/30 at 11pm.   Once it airs I will send a link.

I will be back in Cincinnati on the 30th, so we won't see the story, hope you all enjoy it!

Emma really wants a laptop of her own to take with her to email people and watch videos.    Anyone have a lead on one at a good price?    No extra $ right now, things are tight with no cake orders due to medical stuff.

Tired today and my funny bone is in a coma.   Been getting up really early to take Ryan to camp all week, got kinda spoiled sleeping until 9am every day, this 6:45 stuff stinks!

Will post again when I have humor and the ability to complete full sentences.

"Ready for Take Off"

Got the call from Emma's local ENT that he has cleared her for flight.   More importantly cleared her for flight in a non-pressurized airplane.   I did some research today about small, privately owned planes.   I've never been in one that small and Emma has not been in one at all.    Last night I told Mike (and our friend Steve) that we may be using "Angel Flight" to get to Cinci.   Mike immediately said, "wasn't it an Angel Flight that went down in Lake Michigan a few years back killing everyone but the pilot on board?"   Thanks, Mike for the bolster of courage.   I love you, too.   Maybe driving one of our gas guzzlers or our rust bucket is looking more attractive.

http://www.woodtv.com/dpp/news/local/nw_mich/Plane-crashes-in-Lake-Michigan

I've been doing some research (at least that's what I am calling it when I sit on my butt surfing the net) about where to stay in Cinci and what resources are available.   Hotels will add up quickly when Emma has her long stay operation, and I know that the RMH is available only $25 a night, but having stayed at them before know "just how inviting" they are (NOT!).    No food or drink in your room, share a bathroom with several other families, fart in your room and hear the neighbors laugh, etc.   In Detroit the best available entertainment was watching the rats scurry across the courtyard.  Having been oh, so comfortable at the previous RMH's I was looking at alternatives.   I found a nice campground only 20 minutes away from the hospital.   We have some church friends who live in Cinci and we can stay there, too.   Their place is 30 minutes from the hospital.    Imagine camping in your own, comfortable camper with a private shower, your own sheets and pillow and a fully stocked pantry for those midnight snacks.    Our camper is our home away from home.   I found great comfort in the thought of being able to retreat to my own domain and doing it affordably! 

http://www.greatparks.org/recreation/camping/winton-woods-campground.html



July 2008 we bought our Outback

When we know more about our stay I will definitely look into staying at the campground.   Heck, the other two could come along as well!   Only drawback will be towing it alone.   Truthfully, driving it isn't bad as I am the one who usually drives.   Backing it up alone, well, that a whole 'nother story.    When Mike and I go somewhere he does all the dirty, hard work.   Not that I can't do it, but why not let the hubby be the one to get dirty?   ::Insert girlie giggle::    Isn't there a country song about being barefoot and pregnant in the camper kitchen?    "My man dropped the stays, the kids went aways, think I'll fetch me some brewskis and sit here all day.   I'ze got central air, finished dyin' my hair, need to get me some food but them's squeeters out there.  My dog is a stinkin', the boat she'z a sinkin',  but the redneck next door he just sent me a winkin'."    I swear I've heard that one before.

The girls were very excited to get it!   We use the ramp intended to be a toy hauler as the ramp to get Ellie's wheelchair in and out.   A wheelchair accessible camper!   It was a perfect find for us and a great deal.

What should be apparent to you and makes me feel truly exposed is that this blog reveals just how loony someone can be when they endure as much as your life can throw at you!   Genetics had nothing to do with it, so don't you worry Dad and Auntie Jen.  ;-) 

Repeat after me, " I love big hospitals, I love big hospitals"

The last few days have been a pain in whatever body part you'd like to identify.   I have spent most of the business hours each day making phone calls and jumping through hoops, some of which were set on fire just for their amusement.    I have spoken to 4 nurses or schedulers, none of whom know anything about the situation or my daughters needs.   I get told the same thing by each "this is how our hospital works.   Expect to hear from us in (an unreasonable amount of time).   We are a busy big facility and it takes months to get new patients established".   I would reiterate they must not have all the needed information in front of them as Emma was deemed a priority case and expedited care is anticipated.   Insert kind cookie cutter response used to placate every parent who thinks their child is the most important in the world that that THEY deserve special treatment above all others'.   By the way, I may have that attitude sometimes, yes.  Emma earned it by having over 30 surgeries and beating a 10% chance of survival, so I DO have an important child who does deserve their special consideration.   Especially since the specialist she just saw phoned the physician she is about to see and personally told him he needed to get her in ASAP.

So, with my frustration level approaching a 10 on the scale of: "Melissa looks normal colored in the face at a 0 to..... Melissa looks like a cherry tomato at a 10".  No, that's not a sunburn.  Breath deeply, find my happy place, because you can't strangle the person on the other end of the phone and getting short and snippy with them in contraindicated.    Several deep breaths later (and perhaps a few screams of frustration) I call the next nice person and start the quest for tomato head all over again.

I then made several exasperated phone calls to my Mother crying about how much this is to deal with, how absurd it is to get anything accomplished at a big facility, and pleading for her to come over and help me put purple bows on 150 sugar cookie baggies for an order due in the next hour.   With a timely visit from my Mother to tie pretty bows, the phone rings and it's the woman who told me "it takes months to get her on the schedule, you'll hear from me next week".   Yes, an hour later after I told her she must be missing some information pertinent to her ability to get Emma on the schedule.  But what do I know, I'm just a parent who feels over entitled to expedited care.

Amazingly, and mark your calendars with this one, I was right.   The doctor does want Emma on the schedule ASAP and we have "worked her in" with the 5 physicians necessary to complete her evaluation and plan her course of treatment.   (Said snidely) "Imagine that."

This is usually done with one visit, but one of the specialists is on vacation the week she sees everyone else.  Who gave them permission to go on vacation!?  The audacity.   (that's sarcasm, folks).  Emma goes for her first appointment on Tues the 31st to see a physician who specializes in vocal anomalies.   The following Tuesday we go for a two night stay when she will have every test ever invented and see an otolaryngologist, pulmonologist, cardiologist, gastroentrologist, and an anesthesiologist.   I think I missed one but that should be enough "ologists" anyway for one blog.

At the end of the "under anesthesia" scopes and workups, I will meet with the "ologists" and hear their proposed treatment plan.   From there nothing will happen until after Aug 20th as her ENT is taking a vacation.   Stinking vacations.   Actually it will give us a nice repreave from the long haul down there and give us enough time to plan our strategy of attack to deal with our (mine and Emma's)  absence from the homestead for perhaps 2 or more weeks.  If for some reason her on vacation ENT decides she needs treatment while he is gone he will have one of his associates take over for him.   I want him, so I am willing to wait if at all possible.   He's supposed to be amazingly talented and I want the best for our best.

I've been in touch with Angel Flight to see if there are any options to fly us down.   Jumping through their hoops has been fairly easy, but we are not sure her ENT will clear her to fly with the problems with her ear drums.   Waiting to hear back from her "local" (GR) ENT to see if he says it's okay.   I need to call and find out about places to stay.   There's a RMH (Ronald McDonald House) there but you can only reserve for a stay which is over 4 nights.   Anything under is first come first serve in one of two short stay rooms.   I guess there's hotels that have "hospital rates" and we do know a family from church that live in Cinci.   Good thing I know how to live out of a small suitcase! 

I will continue to post as pertient information develops or if I need a benign place to vent.  If you're someone who feels compelled to help I am always open to the following things which have long been on my wish list.    Two million dollars (was one mil before but with inflation had to jack it up some), cure for the common cold, and world peace.  (yes, that is a quote stolen from my Dad).    If you're not able to offer one of those, well then forget it.    Honestly, the RS at church is going to coordinate any meals or support we need, so if you do want to help please talk to one of them.   The best thing you can do is send us your prayers, good karma, positive thoughts.......or money.   Are any of you independently wealthy?   I've been looking for a new surrogate family, perhaps some of you rich folks are ideal candiates.  :-)

 Kasey's an amazing photographer!

Emma's latest medical news

I wanted to post an update as to what has developed with Emma and her health concerns.    Emma was being seen by an ENT at Detroit Children's Hospital who suffered a medical emergency and was forced to retire early.   Upon his departure and with Emma's need for a check up with an ENT, I found Chad Afman at Helen DeVos Children's Hospital in G.R. For history, Emma was told by her local ENT that her case was "beyond" local ENT's scope and she needed to be seen elsewhere. Upon completion of a scope two weeks ago with Dr. Afman, we discovered that she is not as stable as we thought.   He informed me that she has several pertinent concerns that should be addressed very soon.   Least of our worries (but new on the list) is bilateral conductive hearing loss due to repeated ear drum perforations.   She has a "flap" of skin above her vocal cords which she is using as a false vocal cord enabling her to speak.   The flap is occluding (blocking) her airway 95% closed when she inhales.   It needs to be removed to allow her to breath freely, but it will also take away her ability to speak.   Her vocal cords do not meet in the front as needed to make contact and one is paralyzed "open" making the likelihood of her speaking slim.   She will need surgical intervention on 4 specific areas of her airway.  She is a candidate for a donor trachea but with that procedure still experimental I am hoping to wait for that option further in the future.

We were informed that Dr. Rutter at Cincinnati Children's would be the best choice for treatment.   I have always wanted her to see Dr. Cotton in Cincinnati and fought for her insurance to cover him but was informed we had to stay in network.    Dr. Cotton is now getting close to retirement, Dr. Rutter is in his practice and according to Dr. Afman is a "prodigy" in the treatment of airways.   I anticipate several trips to Cincinnati for short outpatient treatments and at least two stays in ICU after big surgeries.   Insurance is going to cover him "in network" which is a huge blessing!   Emma has a $2,000 deductible and 70% copay on surgeries.   Mike's insurance at work is changing mid-term which stinks, but at least the "blues" (BCBSM) is going to consider him in network.   I have applied for Children's Special Health Care Services which may cover some of Emma's expenses not covered by her insurance.

Being in Cincinnati is pragmatically difficult for us.   Miss Ellie needs 24 hour care and is able to stay with my parents in their home. Mom is qualified to provide her with care but it is physically difficult for my Mom to care for Ellie.  Ellie needs to be lifted and transferred and (no offense to her) my Mom is no spring chicken. Caring for Ellie is a big strain on her body, more specifically her back.   She can tend to her needs but I will need to find help for Ellie's physical care to alleviate some strain on my Mom.   The other two kids can stay at home or can stay with my parents during the day while Mike is at work.   Mike can tend to all the needs of the home, property, and pets when he is home.  I anticipate friends from church will provide meals.   Mike and the kids can always go eat dinner with my folks.  I will cook some freezer meals before I leave; I think Mike and the kids find comfort in "Mom's cooking" while I am gone. I will have to clear my schedule of all cakes and baking commitments.

I don't have any dates for surgery as of this moment, but anticipated hearing from the scheduler last week, so am anxious to get the call very soon.    It is a 5 1/2 hour drive to Cincinnati.   If Emma has an outpatient appointment it will be a long drive to do round trip in one day.   We know a family that lives in Cincinnati and if needed can ask for a place to sleep for the night.  I am hoping she won't have too many office visits, the hospital knows how difficult it is for families who live far away to accommodate short visits.    I am not looking forward to the gas and expenses for these trips!   Long term lodging should be  inexpensive, there is a Ronald McDonald house at the hospital.  The Detroit house charges $10 a night (according to the web it's $25 in Cinci).   I have stayed at them several times before and none of those details worry me.   As long as I have a change of clothes and a  toothbrush I am "good to go".

Please keep my beautiful girl in your prayers.   She is tough and is a fighter but no kid should be asked to endure as much as she has.