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

Seizure Monster

Oh, Seizure Monster, how we hate Thee!  Today started out so peacefully.  I had the morning to myself to get things done, and it was wonderful!  Our afternoon was set to be full of appointments- physical and occupational therapy for Lucy and a check-up for Conner (he needs one for school).
*PURPLE is being used in this post bc it is the color that represent Epilepsy

Shortly before loading Lucy into the van, I noticed that she had one of her "hard seizures", which are not gran-mal, or the type you think of with every body part shaking.  However, her hard seizures DO affect her entire body.  The seizure I saw was only a couple of seconds long, so I just decided to watch her.  Once in the car, Lucy started having them, almost non-stop.  These back-to-back seizures are called "clusters".  We picked Conner up and Lucy continued to seize, on and off.  Instead of going to therapy and instead of making Conner's appointment,  I decided we needed to go straight to the ER.

When we pulled up to OU, Lucy was still seizing until we got to the elevators.  Then . . .  she was FINE.  We call this, "back to baseline".  She acted totally herself, giggles and all!  I decided to take her quickly to the Neurology dept and have a nurse take an immediate look at her, rather than waiting in the ER, knowing that even at the best, she wouldn't be evaluated for several minutes and even then, they would need to get a history.  This was a split-decision and one that was hard to make.  God was so good though because once we got upstairs, as Lucy started seizing again, they took us right back into the clinic.  Our doctor came to see us, which is HUGE, seeing that she stepped out of clinic to do so..  The neurology clinic at OU is in high demand and it takes months to be seen in the clinic.  For our doctor to step away and come quickly to us . . . well, it's a sign of a great doctor! Lucy was evaluated, and her breathing and other sats were stable, so we were able to set up a plan and increased her meds. It looks like Miss Lu Lu has had quite the growth spurt and many has "just" outgrown her current doses.  That's our hope  - that this is all from her weight gain and that this increase isn't a sign of illness or progression of NKH. 


I was disheartened Lucy seized on our way home and has seized on and off all evening.  We've followed our doctor's directions and have recently given rescue meds.  If she continues to seize, we will need to go back to the hospital.  Please pray that seizures will STOP right this moment and that they will stay away for good!  

Air Conditioner - this seemed to little compared to Lucy's health, but it just added to the stress.  This summer, our air conditioner broke and we were able to fix it, but they had told us it was on it's last leg and the next time it failed, we would need a brand new one.  EEEEK!  When it was 78 degrees with the air trying to blow, my heart sank.  The thought came to mind to turn it off while I took Lucy to the ER.  It couldn't hurt, right?  When came back several hours later, I turned back on and headed to my Parent's house to rest in the cool air.  I went back to check on it an hour later and there was no change.  Dang it!  I prayed and I know many of you were praying too.  I left it on and went back.  When Mike stopped by the house after work, the house was cooling off!  And by the time we came back around 830, it was back to normal and is STILL RUNNING!!  I believe God touched our air conditioner and healed it, at least for the time being.  We are SO grateful for your petitions on behalf of something as little as our air conditioner!  God is SO good! We are still in amazement today!


UPDATE for TODAY, 8/24/16:

After the rescue meds were given last night, we saw NO sign of seizure activity. Lucy slept well but hasn't been to baseline, hasn't been back to herself, yet today.  She's had more seizures this morning, so we've called the Neurologist and we are waiting to hear what to do next.   Her body is likely exhausted from the trauma and from the increase in meds, but even with all of that, we wouldn't expect seizures to continue.

I so appreciate your love, prayers and encouragement.  Our Church, Bridgeway, jumped up and into action yesterday, already loving on us in word and deed.  Those texts, those emails, those calls, those visits . . . you don't know how much they mean.  We often feel isolated, even after all of these years.  Yes, WE feel alone and don't have as many close friends as you might think (although we have a great group of support and love).  So when people reach out in love and concern, it touches us and lifts our spirits more than I can fully explain.  

SEIZURE Explanation:  I know all of this can be so confusing and even scary, esp when you see seizures on TV where people are dying, or when a person is in a terrible situation, laying in the ER with perplexed doctors. I'd like to try to clear some things up, at least from a "Seizure Mom", so to speak.

No matter what, Seizures ARE scary and you DO want to stop them.  With NKH (and other neurological disorders and diseases), we must expect seizures because they come with the disorder.  Not ALL seizures call for a trip to the ER, and any "seizure-mommy" will tell you the same thing.  Sometimes the best thing to do is to stay at home and try to get through the seizures.  Moms/Dads/Guardians must use their best judgement and go with their gut when seizures occur.  It's important for us to be in tune with our child and also be informed as well as possible.

The time to call 911 or a time to go to the ER would be one of these things 

(although not limited to, and this is my opinion only).  

1. If a person, without a history of seizures, starts to seize/if you are with a stranger who starts to seize - call 911
2. If your child starts holding their breath and starts turning blue during seizure - call 911
3. If a child hurts themselves during a seizure (they may bleed or have a concussion) - call 911
4. If your child has a high fever and starts seizing - call 911 or take to the ER immediately
5. If the seizure lasts longer than 2-5 minutes, call 911
6. If clusters don't stop, especially for over 30 mins (after rescue meds), call 911 or take to the ER
7. If you are a care giver and don't know how to give rescue meds, call 911 or take to the ER (and contact parents)

Oh, Friends! THANK YOU for your continued prayers for today, and for Miss Lucy.  We also have a very important meeting for Henry late morning, so we are asking the Lord to balance all of that out, while protecting BOTH children in the process.  Our lives are definitely ones of pure TRUST and God shows us over and over again, that WE are not in control.  We are forever grateful for those reminders, even if they hurt.  HE is glorified and we know He does these things for OUR good.  

We'll Keep You Posted - 

Ryan

Clear Tunnel

Life has truly felt like a tunnel the last few days.  I take that back - it feels like that tube at Chuck-E-Cheese - the one you go into when it's your birthday. You walk in and the door is closed and the wind is turned on.  It's a clear tunnel so everyone around you can see you looking crazy, wild and silly - your friends AND strangers! Your hair goes everywhere. They make you wear these goggles which make it hard to see.  You don't know where to look.  You are supposed to be grabbing that "money", but it's all swirling around you so fast that it's hard to even focus.  Yep, that's EXACTLY how it's been . . . 


We've been trying to settle back into routine, and the boys really seem to be thriving off of it.  Heck, I AM thriving off it!  I love having routine and meal times together, and we've been able to do that since we've been home from the hospital.  I have to say - we've been eating amazingly well because of the graciousness of precious friends!  All three of my boys will be spoiled rotten once we get through that last frozen meal that was lovingly prepared for us (I'm afraid I let them down in the cooking department).  

Lu Lu enjoyed a shopping with Mommy and Nunnie on Thursday!

Cheering Henry on at the Assembly 

Henry had one night this week that was really hard we finally attributed it to a loose tooth (what is it with Henry and all of his tooth issues/pain?!).  Thankfully, I pulled that tooth on out and he was acting and feeling better.  He is excelling in school, you guys!  He's even reading A.R. books now and received an award at school on Friday!  

Henry's Assembly 

Oh, Friday!  Lucy looked like she was sleeping during the entire assembly, which seemed odd to me, seeing how loud it was.  After checking, it was clear that she was in seizure - the new type of seizure she's been having where she looks like she is sleeping with some slight twitches in her hands and feet.  I rushed her back to the school office where they quickly got us into an office for privacy (the school handled it so well).  Both Grandmothers were there, so they calmly followed my instructions.  We called 911 and had Lucy taken to OU.  She was out the entire ambulance ride.  

Still "out" during the EEG

Always a Daddy's Girl

They of course took us straight to a room, and it turned out that our favorite neurologist (Lucy and Henry's current neurologist) just "happened" to be in the ER room next to us.  This never happens, ya'll - it was absolutely from the Lord.  The doctor immediately came in and was able to evaluate Lucy and order tests right then and there.  It was comforting to have our OWN neurologist laying eyes on Lu Lu as she was in this unresponsive episode.  


They did bloodwork, an EEG and a CT scan.  All that can be explained is that NKH is an ugly disorder that affects your brain, and how it misfires today may not be how it misfires tomorrow.  These episodes are absolutely neurologic and could be NKH progressing in Lucy's body.  This all could be happening too because she is still healing from ecoli that was in her port and her blood stream.  Mike and I really feel that it is a combination of both things.  


Unfortunately, with seizures and genetic disorders and things that can progress, there's just not a whole lot you can do.  Your choices are limited.  But, we are doing the best thing for Lucy right now, which is having her seen again this week by a few doctors and by increasing some of her anti-seizure medications.  


Conner played a fantastic soccer game on this fall Saturday, and Lucy laughed and giggled throughout the day, which was a real treat.  Henry had a good day too, but he seems to be manic again tonight for some reason and we are praying that he will somehow fall asleep (and SOON!).  


Back to that tube/tunnel . . . 

I know that, in our case, the tunnel is clear because we invite others in to share our journey.  We want to be open and honest, REAL about the ups and the downs that come with losing a child and with raising a child(ren) with special-needs.  We share freely and openly because the Lord has called us to, although I assure you, there are many things we keep to ourselves and to our family as well.  

Living in a clear tunnel isn't for everyone, and I completely get that.  I also know that it may sound silly when I complain about it when I'm blogging here for all to see!  Thank you for your grace as I find the balance of sharing my heart in journal form, passing on our story so that others know they aren't alone, and somehow meeting my deep desire to see the Lord glorified in our roller-coaster journey.  

Scripture, along with encouragement from others, has really helped me over these tough weeks. I will leave you with a verse that a Dear Friend recently reminded me of, and I think it's the perfect verse if you are like me and feel like you are in that tube/tunnel:

Isaiah 46:4

"I am He who will strengthen you; I will sustain you and I will rescue you".  

The Flu

Lucy Belle has the flu.  I'm sure you all know that it is rampant right now, pretty much everywhere in the country.  It's especially dangerous for the old, the very young and for those with compromised immune systems.  The flu can be very dangerous for Lucy and we've really tried our best to keep her safe from it this fall without keeping her in a bubble. We were all vaccinated and in fact, Lucy's doctor is kind enough to have her vaccinated very early each year in hopes of preventing illness.  This time, it just didn't work, which I've heard is the case for many this year.

I had the flu last week, after all of the family get-togethers over Christmas.  I've had the flu before, but this flu was the absolute worst I have ever experienced.  I ran fever for ten days and didn't even know what day it was for most of the time I was sick.  I HATE that Lucy has this flu because I know how terrible I felt with it!  It breaks my heart to know that her little body must ache, her head hurt and of course all of the other symptoms that come along with this flu.

Lu Lu resting in the ER

Check out Lucy's new kick's thanks to Brandy White, Lucy's "I Run For" Runner 

(her shoes were the talk of the ER)

We spent the majority of the day yesterday in the ER receiving fluids and running tests.  We had to find out what was causing her high fever, and really I was surprised that it was the flu.  Once we had been exposed over Christmas, we put Lucy on tamiflu, just in case.  Apparently though, Lucy is what they have called a "tamiflu fail".  So, there's that (sarcasm).

Lucy slept well all night and is still sleeping now.  She's on continuous feeds of pedialyte to keep her hydrated and we are doing our best to keep her fever down.  Mike and I really don't want to be admitted (who does, really?).  Please pray for Lucy's symptoms to subside immediately.  Pray for comfort for her little body and ease of pain and fever.  Please pray too that we would avoid the hospital.  It's not that I'm afraid of going there, it's just that I know all too well how it will affect Henry especially, since changes are so hard for him.  I don't want to cause any other changes if at all possible.

Thank you for your love, prayers and support!

Ryan

All About Henry

This week has been a rough one, I'm not gonna lie.  If you follow us on Facebook, you know that this is true - our hearts have been hurting with more friends who are going through trials and heartaches (more about that in my next post).  My IC flare has intensified with a UTI that won't clear up, and Henry put us through quite the scare! But, this post is really all bout Our Henry Mac . . . 

I've been so concerned for Henry as he started first grade, his first time to go all-day to school.  With everything he has dealt with this summer, including diagnoses and introducing meds, my heart has been even more tender towards our Sweet Boy.

Henry lost his first tooth a week ago!

Henry's been complaining of a tummy ache and a sore neck for almost two weeks.  I had our nurses look at his throat and it wasn't even red.  He didn't have any other symptoms, and although I did believe him, I thought it was all due to going back to school - getting used to carrying his backpack, getting into a new routine, reading at a desk, etc.

The boys were out of school on Tuesday and he slept in until 9:30am.  We had a full weekend with friends and family activities, so I thought he was just tired.  He woke up and ate a few bites of breakfast and went back to bed until about 4pm.  I kept checking in on Henry and he didn't have a fever, but I knew something was up.  I thought he may be coming down with something, so of course I was looking up symptoms online.  When I finally got Henry to wake up, he was confused and wasn't making much sense.  He was extremely lethargic and said his entire body hurt.  He wouldn't even stand up for me, so I knew he was pretty sick.  It was so close to 5pm that I decided to wait a few minutes and take Henry to a pediatric urgent care right at 5pm.

This new pediatric urgent care close by us is run by some precious doctors from OU Childrens.  These are girls (um, doctors) whom we have seen grow up in the program and it is SO exciting to see them go out on their own like this!  Needless to say, we were thrilled when we walked in and saw one of our very favorites, Dr. P and of course she got Henry right in.  Dr. P had cared for Ellie Kate and Lucy.  She knew who we were, and I had no doubt that God went before us because I was a nervous wreck.

Henry couldn't stand up for his weight check and was very wobbly.  He still was extremely sleepy and out of it.  During some of his neuro checks his little eyes rolled back into his head.  I'm not going to lie, I screamed out to God internally at that moment, "Oh God, do NOT do this to another one of my children!".  It looked so seizure-like and I panicked.  His behavior was worrisome and Dr. P knew we needed to head to the OU ER. She called the attending there to let them know we were on our way and what to expect.  And off we went!

OU Children's ER is usually pretty busy.  We waited a while and finally got back, Henry still lethargic and asleep.  We had a new attending - one we had never met before, and it was NOT the same one that Dr. P had talked to before we arrived.  Shift change happened during our wait and thus we had an attending who didn't know us, didn't know our history with the girls (which has never happened in that ER), and who honestly didn't seem to want to be working that night.

Henry's bloodwork came back normal and so did his urine (which I had to ask to be done).  They did an ultrasound on his belly and found some intestinal issues that apparently are not uncommon, and the kind he has was supposedly supposed to correct itself.

Sparing the details, I packed Henry up and took him to the car while Mike wrapped things up in the ER.  Don't mess with a momma-bear who has any background whatsoever in special-needs or in working with doctors and nurses.  Our expectations are unapolagetically high, and we WILL hold you to a higher standard, a standard you pledged to when you became a doctor.  We left without many answers but SO many of you contacted us with texts, emails and messages.  We know you were praying for us; faithful are the prayers of the Saints!!!

Henry has continued to get better each day, although his neck still hurts a bit.  He had a clean bill of health from the doctor yesterday.  She thinks it could have been a bad virus, and I agree.  He definitely was scary-sick, but now he is better!  Henry in particular misses Ellie Kate so much, and this week he even dressed like her while he was home sick.  I'm not sure what to do with that or how to parent that.  His friends Jazzy and Rye brought him some balloons to cheer him up and he let two of those balloons "go to Ellie Kate" by letting them loose outside.  His little heart hurts.

Would you continue to pray for Henry's health?  Would you pray that the Lord would lead Mike and I as we seek wisdom in parenting Henry?  I'm also conflicted about Henry's schooling, although we do like his school and LOVE his teacher.  I just want to do what's best for him and his tender heart.

Daddy and Henry on our "Henry Date" last night

LUCY . . . 
So this update isn't ALL about Henry:).  Lucy is doing SO well and we were able to get her helmet this week thanks to some generous friends!  God ALWAYS provides, and we've been blown away by your thoughtfulness and willingness to bless us.  We have other things we are going to be able to soon order for Lucy and we have been able to pay some of her bills, which is WONDERFUL (I just cannot tell you what a good feeling it is to NOT get a phone call about a bill because it's been paid for!!).  So, thank you.  Thank you for giving and for supporting us through the "GoFundMe" page.  It's so humbling. With all of my heart, thank you.  

She loves it, I promise!  More pics to follow!  

January 20, 2006

Ellie Kate is back in the emergency room today. We noticed some wheezing in her breathing yesterday but thought it was isolated to her nostrils. Today when we woke her up at 7AM for her 7AM breakfast, we noticed her breathing was very labored.

She is at the Baptist ER getting an IV, taking some breathing treatments and getting a chest X-Ray. From all the preliminary reports, it doesn't look like the wheezing is in her lungs (a relief for someone who knows about asthma)

We'll continue to update everyone, as we know more.

-MFM