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| Ways to help Ella & our family can be found at the end of this blog post. |
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":
Calendar ID: 115107
Security code: 6639
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!)
