Three...(by Michael & Lindsay)

Three more weeks.

Three more weeks that Ella has to stay lying flat, 100% of the time, with her brace on most of the time.

Why??

During surgery, when the bracket was being placed into the femur head (on the left side) the bone cracked.  The surgeon had to move the bracket to a different spot in the bone.  The break resulted in a space between the femur and head of the femur.  This space now needs to build bone.  Hence, we need for her to lie flat for a longer period of time.

At the end of the surgery we were made aware of the cracked bone, and we weren't surprised by that news.  Simple fact...kids with SMA have more brittle bones for the mere reason that maximum bone density isn't achieved due to lack of gravity and pressure from not standing or walking.  Just another way they are more vulnerable than their same-aged peers.  

And while were were not surprised by the cracked bone we were surprised that she must remain in the same position for three more weeks that she's been in for two weeks already.  Surprised and feeling low.  

We're tired.  It's exhausting caring for her through the night...although the nights are slowly improving.  The days, thankfully, are going well.  She's happy and basically pain-free.  The surgeon explained that in order to get to the bone, especially the reconstruction of the left socket, the muscles had to be separated from the bones..."it's a messy thing" he said, "and it takes time for those muscles to heal themselves...and it's painful."  Yes--we know.

And poor Ella...it is difficult for her to sleep and she keeps getting pumped full of narcotics to battle the pain.  Her screams are deafening and heartbreaking...she fights so hard.

So our timetable has altered some.  Getting her into a sitting position won't start until that bone is healed.  Throw into the mix that school (for all 5 of us) starts in 3 weeks and we now have to begin prepping her teachers and staff for her to come to school in a state unknown to us at this point.  Will she still be in the medical stroller or able to sit in a wheelchair?  Will it be a combination of the two?  

Only time will tell...three weeks time.


 

"This, too, Shall Pass"...(by Michael)

"My head grew heavy and my sight grew dim. 
I had to stop for the night."

 The  Eagles; "Hotel California" (1976)

     We've researched why it is that pain seems to amplify itself overnight...there doesn't seem to be a definitive answer.  Some speak of the fact that we tend to breathe inhale the carbon dioxide we expel while we exhale thereby increasing the size of cells in the body...which can affect pain receptor behaviors.  Others talk about the fact that one is alone, in the dark, while everything is still and quiet...the focus easily shifts to the pain which is the only stimuli.  Still others postulate that daily activity tires the body out, thereby making pain more pronounced during the night.  Theories abound.

     Whatever the reason it is a reality in our world these days (or nights to be exact).  Ella's pain is exacerbated overnight. Of the 8 nights we've been home we have had two uneventful and 6 horrific nights.  We've systematically changed only one variable at a time to pinpoint what works best to alleviate her pain and allow her (and us) to sleep.  It's a tricky path to traverse as medications have side affects that we must keep in mind, SMA has "protocols for care" that we must follow, and communication about pain with a tired, medicated, 5-year old is as difficult as it sounds.

     Our nights are filled with medication reminders sounding their alarms via our cell phone apps.  They call for action every 2-3 hours as Ella is currently on 5 medications to manage pain and allow for maximum comfort.  Doses are small because she is small. A balancing act of rotating medications takes place in order to maximize their intended function while maintaining her homeostasis.  In the meantime, "our heads grow heavy and our sight grows dim".

     While dressing one of her incision sites we did notice that while one of the incisions is clean the surrounding skin is chaffed, raw, and beet red.  This was discovered a few days ago and since then we have been diligent in cleaning it gently. We're hopeful that any discomfort caused by this irritation is alleviated  by our cleansing procedures.  Ella tolerates our make-shift nursing care well.  She does her best to let us know what's happening to her and always has a smile, a hug, and a kiss for us. 

     Sudden screams of pain in the night wake us in-between medication reminders.  Sometimes it's easier (and seemingly more efficient) to simply stay awake after quelling her episodes until the next medication round. Nights are long and morning rolls in despite our lack of sleep.  We do the best we can of alternating nightly care and afternoon naps. We still have the daily activities of life that need tending to and through the generous, caring help of many we are able to keep our young household of five running.  

     We'll get through this, as my late mother used to say, "This, too, shall pass."

"We're Out of the Woods" but not "In the Clear"...(by Michael & Lindsay)

Ways to help Ella & our family can be found at the end of this blog post.

On the way to the hospital last Thursday morning, in the wee hour of 5:00 am, the three of us (Mommy, Daddy, & Ella) sang along with Taylor Swift's "Out of the Woods"...it has become a theme song for us this summer...especially the refrain, "Are we out of the woods (repeat 4x)...are we in the clear (repeat 4x)?"

Thursday dragged on for an eternity, butterflies swarming in our bellies, gruesome thoughts circulating through our heads, anticipation of the unknown.  She came through like the champ she is...she did so very well.

Thursday evening through Monday morning proved to be a roller coaster of physical, emotional, and spiritual ups-and-downs.  Bi-lateral hip surgery with (left-side) socket reconstruction is a major surgery for anyone let alone such a little girl.  The pain she experienced, as we could tell from her resonating screams, yelps, and cries, must have been horrible.  Bone pain is the worst.  Watching her and waiting as drug regiments were attempted while keeping in mind the underlying cause of this all...the SMA...took emotional & physical tolls on us as her parents.  Stroking her head we prayed with her to help calm her, reminding her of the love Jesus has for her; reminding us of the strength God shares.  

Monday morning slowly rolled in bringing with it continued pain.  The "pain team" arrived early as they knew we wanted to see them asap...we talked briefly about what Ella needed as a child with SMA and they responded with what they could do for her.  By the end of the conversation we had a pain management plan that we all felt would work...at least we hoped so.  Within minutes the plan was implemented..and shortly thereafter, Ella was playing...singing as she does, and then, boom...she fell into a deep sleep...one that had eluded her over the past several days.

We were able to change her diaper, give her a sponge bath, promote bowel movement, as well as perform two respiratory treatments all in a matter of hours.  She complied.  When we were cleaning her the second time around she nary said a word...no pain, no discomfort, no screaming...in fact, she held a pretty funny conversation with us as we cleaned out the rather large "mess" she had created (with some help from Colace and other "things"!).  

"We're out of the woods"...but~~
we're not "in the clear".

Once we get her home we have to establish the routine of care.  The next two weeks Ella will be confined, almost 100% of the time, to her total body splint---which keeps her in a lying down position.  We've talked extensively about adaptations we will make for her to provide optimum care and comfort.  We've decided to take on "shifts" with our kids.  One parent has a shift with Ella while the other takes Ava and Henry and then we switch.  We will use our land-line phones' intercom system to call the other person when Ella requires the hands of two adults (diaper changes, bathing, moving her, etc.).   This is the basic outline yet there's much more.  As we all know, there's always more!

During the second week of the return home Michael will continue to tutor.  Lindsay will continue to prepare for Fall Sunday School and mentally prepare to go back to work full time at Ann Reid.  Grocery shopping, laundry, lawn care, and meals (among other things) must also be accounted for.  No...we're not in the clear.

Throughout these past days we have been shown how much Ella is cared for by so many people.  We often remind her of how God has blessed our family with the love and support of so many.  People have already stepped forward and have helped during this time--family, neighbors, and friends.  Thank you.

Many have let us know that they are in the wings, waiting to help, and we know we're going to need it in order to get us "in the clear".  To this end we have created a "Care Calendar" that will allow anyone to "sign-up" to help.  

Please use the following link, enter the Calendar ID and Security Code if you are interested in helping us get "in the clear": 

www.carecalendar.org

Calendar ID: 115107
Security code: 6639   

From our family to each one of you---all of you---thank you.

Michael, Lindsay, Ava, Henry, & Ella (Sasa & Doublestuff [cat], too!)

Ella's Hip Surgery Update (7-10-15)

She was wheeled away to surgery in silence.  She didn't bat an eyelash as they took her away.  Mom and Dad, on the other hand, fought back the tears and tried to quell the butterflies in their stomachs.

A texting and telephone system is in place at Lurie's so parents can get regular updates throughout the surgery.  Half-way through we got a call that she was doing well.  Blood loss at a minimum and the left leg completed.  Right leg about to get started.

We sat with our Pastor and had oatmeal and coffee.  We talked.  We discussed.  We prayed.  Grandma and Grandpa joined us at lunchtime.  Another call was made from us to the operating room and they were just finishing up the left leg.  We had an hour to go before we were out of the woods...in the clear.  We took that hour to have lunch despite the butterflies dancing in our stomachs.  Good conversation ensued.  

Next to the impressive dining area is one of Ella's favorite places in the hospital...Lori's Gift Shop.  As we were searching for a new stuffed animal to help welcome Ella back from surgery Lindsay received a phone call from the OR.  Surgery was finished and Ella was being taken to ICU.  Butterflies multiplied and seemingly grew.  Questions swirled in unison with those butterflies...how much blood did she lose?  How did her respiratory system hold up?  Was extubation successful or was she still intubated?  What kind of casting was used--a hard plaster cast or a removable total body splint (this determination would be made at the time of surgery based on several factors discovered during surgery)?  

How was our Squishy?

We found a stuffed giraffe that we knew Ella would love and headed back up to the OR floor.  Shortly after, Ella's surgeon brought us to the 16th floor (ICU) and we sat with him for a briefing.

Ella did wonderfully in surgery.  Blood loss at a minimum, her respiratory system tolerated the procedure well, and extubation was without incidence.  They decided on a removable body splint.

While her right femur did crack while the brace was being installed the surgeon explained that he simply moved the brace to another part of the bone and the bone will heal itself quickly.  We'll take it!

The first night in the ICU sleep eluded Ella as the pain invaded her little body.  If she did fall asleep it was for a short time.  Inevitably though she woke up crying...yelling for Mommy, Daddy, Doctor.  

Through the night we took turns tending to her, the nurse being there each time.  We soothed her, medicated her, and reassured her.  She wanted her brace off...that's all she wanted.  Doctor's orders forbade it.

Morning crept into the room and the pain persisted.  Every waking moment she was crying.  An order went in requesting Valium...we had to wait though.  The staff thought that muscle spasms was contributed greatly to her pain...Valium should relieve the spams.

By late morning and following many tears, the Valium arrived and quickly took effect.  Her mood changed, her voice changed, her comfort level changed...all for the better.  She's on a schedule for the Valium now as a way to manage her pain.  It's a roller coaster as the medication wears off and we wait for the next cycle...we're adjusting accordingly, though.

She's strong...no doubt about it.  The staff sees that too.  With anticipation we wait to hear if we can move out of ICU and onto a different floor.  Going home, however, is a conversation we have yet to have...only time will tell.

 

Simply Asking...(by Michael & Lindsay)

Surgery is set for Thursday, July 9, 2015.  As this is written it is Sunday, July 5, 2015.

We've worked out plans for Ava, Henry and Sasa.  We're still working on Doublestuff (the cat...that should be no problem, though).

We've sat the kids down and explained the upcoming situation; making it as positive as we could. While the thought of a 7-hour surgery on Ella scares us immensely, we know we must rely on God and each other to walk through this time.  We also know that we rely on others a well.  Prayers, cards, visits, and encouragement have always been so abundant when times are hard.  This time, however, will be especially difficult simply because of pain, immobility, and uncertainty.

While pride often hinders us in asking for help we know we must set it aside for now and simply ask.

Whatever way feels best to you we are asking for some help.  Be it prayers, positive thoughts, a phone call or card, a visit at the hospital or our home, a play-date for Ella, play-dates for Ava and Henry, or whatever other way feels best to you...we simply know that this is where a community can be so important.

We don't really know how to thank you...for all you have done for us in so many ways.  We thank the Lord above for the incredible care He has bestowed upon us through you.