Down and Out with a Sick Little Lucy

Oh, Brother.  I am worn and weary tonight, friends.  It has been a very, very long day.  Mindy and I took Lucy Belle to her ORL/ENT appointment.  They were very busy, so we ended up waiting a very long time.  The doctor is just so wonderful and quick to listen to me.  He is also good at caring for Lucy and her "non-typical" needs:).

The good news is that Lucy's ears are clear!  Both tubes are in place, which we didn't think was the case.  No ear infections in our girl, thank the Lord Jesus (really and truly).  But . . . Lucy's throat is super red and her tonsils are really big.  She's also still screaming most of the time in pain.  It isn't screaming seizures, and I really don't believe it is a crying spell.  I believe she is hurting, so we have to do our best as a team (doctors included of course) to get to the bottom of it all and get Lucy feeling better.

Our ENT believes that we will likely need to get Lucy's tonsils out.  The problem is that he thinks this will be a very hard surgery on our girl.  He said to plan on staying at least a week (we don't have a date or anything yet, he was just preparing us).  It makes me sad to think of putting Lucy through something so hard, but I also HATE seeing her in pain!

After the ENT, we went straight down for a strep and flu test (boy, I am so very glad Mindy was with me to help!).  You may remember that Lucy has been positive for strep throat for almost a month now.  That has brought on the almost endless screaming, the need for narcotics, the extra doctor visits, the diarrhea, the antibiotics, etc.  In fact, she's been on four antibiotics plus the IV rocephin during our last hospital stay (we didn't swab for strep at that time, but we have all come to believe that she likely had it at that point).  NOTHING HAS WORKED. She tested positive again today for strep.  SIGH.  They even tested Lu Lu for MRSA because of the re-occurring, non-stop infections that aren't responding to ANY of the antibiotics.  As one of our docs said today, Lucy has had all the "big gun" antibiotics pulled on her, and nothing is touching the infection.

Because of the infection and pain, Lucy has had a huge increase in seizures.  We've seen seizures that are more severe, longer-lasting and seizures that are presenting differently than usual.  Because of this, we also visited neurology today, where our sweet neuro upped some of Lucy's seizure meds.  She also thought that Lucy may be having severe headaches or migraines since she's hitting her head and pulling her hair out in pain.  So, we are starting a med for that as well.

So, what do we do to stop all of this???  The Infectious Disease doctors are being consulted and will be added to our team for this situation.  I'm praying they can shed some light and offer some remedies.  They at least have to have some ideas for treatment, right??  We are waiting for those MRSA results, and we are waiting to hear from our team.  I am SO grateful to have all of our specialists at OU Children's where they can quickly and easily share information, confer and make plans.  It's a pretty amazing thing, and I'm anxious to hear what they come up with so that Our Girl can start feeling better.  And God-granted, the increased seizure meds and additional medications will help with the issues Lucy is having.

Here are some helpful ways to pray:

• Pray for Lucy's complete healing
• Pray for her ear and throat pain to stop (her throat pain causes her ears and head hurt)
• Pray that seizures will slow and that Lucy Belle will respond well to the med increases
• Pray for supernatural rest for each of our family members, including my parents and our nurses who are all doing more than their share to help us!
• Pray for God's provision for our family

On a VERY happy note, I'm posting a precious, precious video of Lucy Belle.  This was taken at our outpatient therapy yesterday with our Speech Pathologist, Lendy.  This is just a glimpse of how well Lucy is doing developmentally!  I wish I had taken the video longer.  This video is Lucy and her version of signing "more".  We are just thrilled and can't wait to see the other things that the Father will all Lucy to accomplish!  Praise God!  

Tired, Weary and Down and Out . . . 

Ryan

A Woman of Faith - My Friend Jenni

Many of you have heard me talk about my friend, Jenni Kufahl.  I've known Jenni since I was a freshman in high school, when we cheered together under the direction of her mom, Deani - our Cheer Coach.  I thought Jenni was so cool and so beautiful, and she still is! 

Life has gotten a bit busy for us both as she married a coach and has seven gorgeous children.  I've been busy too with our NKH Journey and all that has come along with it.  Jenni organized meals when Ellie Kate was first on hospice that first year, and it meant so much to me.  Then we reconnected when Lucy was born, and she came and visited us in the NICU, bringing notes of encouragement and love from the students in her husband's class at Christian Heritage Academy.  We stayed in touch on-and-off, and then Jenni was shockingly diagnosed with cancer about two years ago.  Cancer.  My friend who is a wife, a mother to seven children, was diagnosed with a rare form of cancer that seemed to come out of nowhere.  And her fight began. 

During her fight, Jenni has continued to encourage me.  You may remember me posting about how Jenni came up to the hospital that last day Ellie was inpatient, the day she came home from hospice.  Jenni brought me a Dr Pepper that morning (one of my favs), and prayed with me and over Ellie Kate that day.  She took a picture of EK and I together - one of the last ones I have.  She also visited us the day before Ellie Kate passed away, bringing a sweet gift along with her.  I was also with Jenni when Conner broke his arm, and because of her connections, we were able to take Conner straight to the Orthopedic doctor and straight into surgery.  This girl is a blessing, ya'll. 

Recently, Jenni spoke at the chapel service at Christian Heritage, and I wanted to share that video with you.  Watch it, listen to it; let the words sink in.  Let the Lord and His Spirit permeate your spirit through His Word that is spoken during this testimony of faith . . .

Jenni's Testimony

I'm asking you to pray for this friend, this Woman of Faith.  Jenni is in the hospital now, undergoing more chemo as her cancer has spread yet again.  She's fighting hard, and trusting the Lord and His Will for her life.  We know, without a doubt, that God WILL be glorified no matter how He chooses to heal Jenni.  He is FOR Jenni, and is FOR her family.  His heart is pouring out over her suffering, and yet He has allowed it for His glory and for her good.  That's what God does with tragedy and with trials in the lives of Believers.  He allows bad things to happen so that He alone can be glorified in ways we could never imagine - big, mighty, amazing ways!  Like Heath making a half-court shot at a Thunder game - and thus the Gospel was shared on ESPN, CNN, local news, and more! 


Trials are blessings because God is with us in an intimate way during them.  They are blessings because He uses them to mold us and make us more like Him.  They are blessings because it causes those around us to cling more to Jesus, and what could be more precious than that? 


Please Join Us in Praying . . .

• Pray for Healing for Jenni's body, here on earth
• Pray for ease of pain and that Jenni will feel comfortable and at peace
• Pray for Heath, Jenni's husband, as he leads his family and cares for Jenni
• Pray for Jenni's parents and her brothers and sister, as they care for Jenni and for each other during this time
• Pray for all seven of Jenni's precious children.  Pray that God would surround them with immense peace.  Pray that they will feel loved and secure during this trial.  Pray for God to meet them where they are.

Jenni and Heath - God has and is working through you in a mighty way!  We are so very proud of the way you have handled this adversity.  God is truly well-pleased with each of you and with your family.  You are blessed.  You are loved.  We are pleading to the Lord on your behalf!  May you feel His rich presence surrounding you.  May you hear Him sing His words over you.  May the Spirit of God fall on your shoulders, filling your home, your hospital room, your car - every place that you may be.  You have created a great and rich, godly heritage for your family and for the world to see.  Thank you for using your fight to bring glory to Jesus. 

Ryan

Some Very Sweet Things

Some very sweet things have been going on around here, and I wanted to share them with you.  Sure, we've been sick and have been struggling in several ways, but God always, always shows His love for us - His sweetness.

This Morning
 I walked by Ellie's room and caught myself before opening her door to wake her for school.  It took my breath away.  I had forgotten and was about to walk in and wake my Precious Girl.  At first I was very sad and frustrated, and I posted about it all on FB.  Then I read a response from my Aunt Carrie, and it changed my perspective on things.  I've chosen to be thankful for what happened this morning.

I'm thankful, that for a fleeting moment, I had a taste of what used to be.  That was a sweet thing.  I'm thankful at how much I love Ellie Kate - that I love her so much that when I am tired and weary, I sometimes forget that she isn't with us.  I'm grateful that she is safe and whole and her body doesn't have to endure all that she did on a daily basis here on earth.  Even on her best days - no more wheelchairs, no more tube-feedings, no more diaper-changes, no more inability to walk and talk!  I am grateful, and I am grateful for that moment this morning, as strange as it sounds.

Chair
Lucy has been needing a new sleeping chair (I may have mentioned this before on Carepages or on the Blog).  She now sleeps in a nap-nanny that allows her to be safe and sound in her baby bed while she receives her overnight continuous feeds.  She's safe in this chair because we watch her at night when the night nurse isn't here, however she is growing out of it and we've been looking for a permanent solution.

A while back, we found a Tumble Form chair that would keep Lucy safe while in her bed at night, and the best news is that it comes in various sizes.  But, medical equipment is very expensive.  Ridiculously so, and insurance only covers so much each year in durable equipment.  Today we came home to two giant boxes on our porch, and guess what was in them???  A TUMBLE FORM CHAIR!!  What in the world?!  There is no note or name on the invoice.  It was just delivered.  How sweet it was for God to do this today!  As we were feeling sick and down and tired, the Lord brings this to our door.  Such a sweet, sweet gift.



Doctor
I had a special and unexpectedly uplifting doctor appointment today.  I've had a lot of health issues since Ellie passed away, and I've been trying to deal with each thing one at a time.  So today I was able to see a specialist.  At the end of our appointment, he asked if he could pray for me.  Of course, I was elated!  That man prayed so sweetly, asking for God to heal my body and my heart, asking God for wisdom and direction and his oversaw this part of my care . . . it was so precious to me; a little gift from the Lord for sure.  I'm so grateful.  

We've had many other expressions of Love from others and from the Father this week as well.  I love to see people loving on one another.  I love to see the Kingdom of God at work.  I love to see His sweetness for me and for my family through the little things.

How is he showing you His sweetness this week?

Ryan

Again?!

Well, Lucy has strep.  Again.  You may remember that she was diagnosed with it two weeks ago.  It ended up progressing and causing some GI issues, which in turn caused us to go to the ER, which then caused a four-day hospital stay.  Sigh.

Lucy Belle has been hitting her head, pulling her hair out, scratching her face, and screaming uncontrollably, so I knew that something was hurting her.  Even the strong pain meds and anti-anxiety meds aren't keeping her comfortable!  It makes my mommy-heart hurt for my Baby Girl.

I thought it was her ears, but the ENT looked at them today (he thankfully worked us in), an they were all clear.  We tested for RSV, FLU and other viruses in the Pediatrician's office, and all were negative (YAY!).  Then they decided to swab Lucy's throat and check for strep. Really, after a hospital stay with the "atomic bomb" of IV antibiotics over a four-day stretch, her strep should be gone.  Surely.  There's no way it would still be there.  We were shocked at the positive test!

So now, we go back on strong antibiotics and we go back next week to see if it's clearing up.  If not . . . well, I don't know.  Do we just take her tonsils out?  Do we admit and do strong antibiotics again?  And how did Little Miss contract strep?  We don't take her in crowds; heck, I don't take her anywhere really!  And everyone who comes into our home takes their shoes off and disinfects their hands at the front door.  How do we keep her healthy during sick season?  I have no idea.  We can't live in a bubble, that's for sure.
Ending on a sweet note, I was able to clean out Ellie Kate's closet this week.  This was a HUGE thing for me, ya'll.  I had left Ellie's closet the same, untouched for over a year.  It was time to put those precious clothes away.  I had a good motive for doing it - a dear friend is putting together a quilt of Ellie's shirts for me!  She offered back when Ellie Kate was on hospice, but I haven't been ready until now.  God's prepared my heart, and I was ready to give those little clothes over to be worked on this week.  I cannot wait to see the end product.  What a priceless gift!!

Ways to Pray:

• Pray for ease of pain for Lucy
• Pray for wisdom for the doctors and for me and Mike.  
• Pray for the boys as they have been acting out due to the uncertainty of Lucy's sickness and the recent hospital stay.  
• Pray for my parents as they've been helping out SO much, and I know that they are so tired.  
• Pray for God's provision (we need Him to show up in BIG ways)

Thank you for keeping up with us and for loving us well!

Ryan

That Wonderful Chair

Ellie Kate's chair has now left our home.  I'm so grateful for the prayers you said on our behalf concerning this very thing.  Your texts and messages about it have meant so much.  Really, I felt like part of me was leaving our house as that chair was loaded and driven away.  It was heart-breaking, and I sobbed like a baby.  That was MY Daughter's chair.

One of our friends, Amy McLean sent me a message and told me about something she had seen on Pintrest.  So, we decided to make some lasting memories with Ellie's chair, and with Amy's recommendation, we did some special artwork!

These little canvases are precious to me - precious to our family.  Each of the boys will have one to take with them as they grow and move on in life.  Mike has one for his office.  We have some for our home.  The tracks of that chair will stay with us forever through these canvases.  What a dear thought.

I wanted to share these photos with you tonight.  I wanted you to see how God allowed us to make lasting artwork out of Ellie Kate's chair.  He orchestrated it so beautifully, and I think they turned out really well (thanks to my artistic husband!).  I'm thankful to Amy as well, whose own daughter suffers from a genetic mitochondrial disorder; thankful that she came across those ideas on Pintrest; thankful that she shared the ideas with me.

Enjoy these sweet photos and the last few pics we took of the chair itself (holding some priceless cargo, I might add!) . . .

Ryan

Jiggity Jig!

We are HOME!!  Lucy's still a bit slow on feeds and still in pain with her ears, but we are on the right track.  The hospital is so full of RSV, flu and pneumonia, that we were anxious to get Lucy out before she caught anything else.

And guess who else is home?? Our friend Makenna!  It truly is a miracle that she is now home this evening.  The doctors and nurses never thought that she would be back to a state that was stable enough to be home, yet that's where she is.  God is a god of mysteries, and we trust His goodness in keeping Makenna with her family a while longer.  He has more things for her to accomplish!

Thank you for praying for us and for loving us through this stay.  As always, we are blown away by the way you've reached out and encouraged our family during this time.

Home Again, Home Again -

Ryan

Still Here

Well, we are still here at OU Children's.  At this time, Lucy is getting ready to start a little bit of formula over the pump.  That means a small amount of formula (about 1.5oz) will go into her belly over thirty minutes.  It's not much, but it's a start! We will see how she tolerates it, and that will determine the next step.  We hope she will do well with this feeding, and that we can get home soon!

Lucy's still having trouble with pain.  She's been screaming terribly and pulling her hair out this morning.  It's so hard to watch.  I so wish that Lucy could tell us what is wrong; is it her head?  her ears?  her belly?  No one knows, and so we guess and we give her pain meds.  She's had morphine and lortab already this morning, and finally she has fallen asleep.

Also, Lucy's ears still aren't looking great.  You can imagine our frustration as we JUST had new tubes placed in December!  I'm not sure why she has so much trouble with those sweet ears, but they sure do hurt her.  We will be doing our third dose of IV antibiotics for her ears this afternoon.  Bless her heart.  Will we always have to be admitted for ear infections?  Will she always get them?  Will she need new tubes?  Will they ever work correctly?  

It's amazing how sick Lucy's ears can make her.  As you've read, she requires the heavy-duty meds through the IV.  She requires the heavy-duty pain meds through the IV.  She seizes more when she's sick, and every sickness causes a host of problems.  What started off as strep last Friday has us here in the hospital this week, and has turned into full-blown ear infections, possible stomach bug/GI issues, dehydration, seizures, inability to take one of her NKH meds, etc.  This, My Friends, is why special-needs mommas absolutely hate "sick season".  

Thank you so much for praying for us.  Lucy and I have both been resting really well overnight at the hospital and our nurses and doctors are taking excellent care of us.  We wouldn't want to be anywhere else in Oklahoma!  We just need our Little Princess to be healed and for her infections to clear up.  Thank you for surrounding us with love and prayer!

Ryan