Lucy - Health Update

My Precious Lucy-Girl.  I haven’t posted or shared much about Sweet LuLu in a while.  We just got home from a long afternoon/evening in the ER and we have some big changes coming up where Lucy’s health is concerned.  It’s been so long since I’ve shared about Our Sissy, I felt it was it was time.  Lucy needs the prayers and I need to rise above my fear and shame. 

The fall seemed consumed with getting Henry’s IVIG treatment, which miraculously took place right before Thanksgiving.  Then came December, Ellie’s Month of Reckless Love, and we were focused on Ellie Kate’s memory as well as spreading Reckless Love in her name.  We are humbly grateful for everyone’s support and participation during these months!  I’ve hesitated going into details about Lucy while so many of you have supported and loved us in other ways (again, with the shame and fear). 

FEAR: Laying it all out there – sometimes I feel like “the person who complains all the time” or, “the one who always needs something”.  When I share pictures of Ellie Kate or Lucy, I can feel like others may think, “Here come more pics of the little dead girl, again!” or, “If I see ONE more picture of a sick little girl . . .”.   I NEVER want to be a “Debbie Downer”, ya’ll.  It crushes me to even think that could be a possibility.  It’s a fine line, wanting to share our special journey with others, while not coming across the wrong way.  It makes me sick to think of being seen in that light, especially because I feel called to share.  

With all that I am, I feel the world (The Church, in particularly) needs to know how to better love and serve those with special needs, those who are medically-fragile and those who’ve lost children because of those things.  I must continue to share, swallowing my pride where this is concerned.  I am choosing NOT to let fear control me from sharing the not-so-pretty things about life. 

LUCY: From the beginning, Lucy has struggled with bladder issues and has suffered from frequent Urinary Tract Infections.  Those UTI’s have increased over the last few years and in 2018, Lucy had approximately 8-10 UTI’s.  After extensive testing, we know what causes the infections in Lucy – she retains her urine.  We aren’t sure if Lucy “holds” her urine on purpose or if her brain simply doesn’t give her bladder the right signals, preventing her from urinating at appropriate times.  At this point, Lucy’s having back to back infections.

Big Girl, holding one of her Christmas gifts this year!

INFECTIONS: Last Summer, Lucy suffered from a few UTI’s as well as from C-diff, an infection of the intestines.  In Lucy’s case, this infection was caused by the frequent use of antibiotics, trying to treat her UTI’s.  C-Diff isn’t something you want to have – it can be incredibly dangerous, deadly, and the more time one spends on antibiotics, the more chance one has of getting c-diff.

In the fall, doctors brought up the possibility of using a urinary catheter on Lucy, here at home.  We are NOT afraid to use a catheter on Lucy here at home, but the reality of it all seemed impossible.  She is our, “Wild Cat” and much like her Big Sister, likes to bite, kick, scream, hit, bang, pull, and anything else she can do, to stop others from holding her down for any type of procedure, especially for catheterization. 

PAIN: The infections are incredibly and understandably very painful for Lucy.  She cannot sleep well because of the pain and bladder spasms, even with medication and treatment.  She can’t get comfortable during the day time, often crying hysterically when she urinates.  It’s absolutely heartbreaking because Lucy doesn’t at all understand what’s going on with her body.  No matter how I explain it or what I might say, she cannot be comforted by the meaning of my words because she mentally cannot make sense of it all.  Lucy just knows she hurts; badly, excruciatingly at times. 

 

SOLUTIONS?: Lucy’s been running a high fever, and any type of fever is rare for her.  With the fever showing up last night, I knew something was brewing and figured it must be another UTI (we finished antibiotic treatment for the last infection just two weeks ago).   Other symptoms popped up so, after a call to her pediatrician, we decided to go ahead and take Lucy to the ER.  Per usual, they were great and got us right in, taking cultures, giving fluids and running a general antibiotic.  Sure enough, Lucy has another UTI.  No wonder she’s just miserable, bless her heart. 

We’re now faced with one probable solution: a suprapubiccatheter.  It’s something new.  It’s something surgical.  It’s something that will be an ongoing surgical commitment.  We have no experience with this whatsoever, unlike most things we’ve dealt with up until now.  BUT, we are ready and willing to learn, especially for Lucy’s benefit.  I will keep you posted on Lucy’s health and I hope to do so more often than I have been, pushing myself beyond fear. 

Daddy Snuggles on Christmas Break

PRAISE:  I am SO grateful to be able to post about Lucy in this way, to have the privilege of asking for prayers for her body and mind!  Last winter, especially was excrutiatingly difficult for Lucy as she continued to waste away, despite our best efforts.  Her body started failing and we had prepared our hearts, especially around Christmas-time.  God has SPARED our Daughter, and we give HIM alone the glory for this!  While Lucy is still far behind in weight, she has more good times than bad, the total opposite of last year at this same time. 

THE SUM:  Tonight, in the ER and now at home, I’m reminded of how precious and fleeting life truly is.  Yes, this same message is shared so often, almost everywhere we look.  HOWEVER, I encourage you to truly, STOP and take a moment to think about it.  We get frustrated and flustered, caught up in the activities of life and what we feel are urgencies, making us worry, fret, lose sleep, and lose happiness in this life.  This life is ONLY about loving God and loving others; those are the only things which are eternal - everything else .  .  . EVERYTHING ELSE will melt away, falling to the wayside, for us to never think of again.  

Whenever you have the chance (and I mean really, whenever!) reach out and give a gentle touch, give an encouraging word, give a hug; share, “I love you”, or give “pat-pats”, like EK and Lucy do to those they like.  It can be over in a moment.  It can change, drastically.  ONE MOMENT.  OVER.  DONE.  FOREVER. And all that you’ve done will be IT – the sum of your life.  Are you satisfied with that sum right now, at this very moment?  You have the power to change it.  Trust me, you won’t EVER regret showing Reckless Love. 

Ryan