Monday Morning Update

 Hey everyone,

   Early this morning around 5:30 I had a bit of a scare--I was talking to the nurse and they were running both antibiotics at the same time and all of a sudden I couldn't talk and couldn't stop coughing and my throat felt really weird.  They gave me a lidocaine (bleh!) breathing treatment and it numbed my gag reflex and I was able to stop coughing.  Had to pray a lot through that.  Thankful I was talking to the nurse when it happened so I got help right away.  

   The scopalomine patch is helping, but I notice as the day goes on and my brain gets tired, I start to get dizzy and I can't look down without spinning like crazy so I'm using my vestibular rehab skills from the past to be able to walk with the walker.  Since today is a holiday I probably won't see the physical therapists until tomorrow.  

  I'm also itching like crazy, so they gave me zyrtec but said that your scalp itching is a really common side effect of colistin.  The zyrtec is helping but it's definitely still there.  

God has given me wonderful nurses so far.  Today I've gotten to talk to my tech a little about the Lord, which is a praise! Please pray for wisdom for my words the rest of the day and for God to open his heart to the truth! 

Thanks for checking up on us!  I would write more but it's hard on my brain so I'm gonna sign off for now.  Hope y'all have a great Monday! (The South is sinking in lol) 

Balance Affected **Answered Prayer**

 Just getting on for specific prayer for my brain/balance: I went for a walk to see how my balance was.  At first as long as I was walking straight I was ok, but if I turned my head it's like the message of how to move my legs isn't connecting.  My head and body just feel heavy.  The doc came in and we are going to try a scopalomine patch since I haven't tried it since I had the cholesteatoma so we'll try it and if it makes it worse, we'll just take it off.  They are going to get me a walker and physical therapy.  Everyone here is SO responsive.  We are also going to try and run the colistin slower to see if that helps.  

Thank you for praying!! 

God answered your prayers!! The scopalomine patch is working--I feel like a new person!!! My balance still isn't the best, so I'll use the walker for precautionary measures, but SO thankful.  God is so good! 

 

Started IV's and off to the Races!

I got the first loading dose of IV colistin yesterday afternoon.  They did double what I will be on every 12 hours and then I get the IV Meropenem every 8 hours and it takes 3 hours to go in.  So far my lips/mouth are numb, I'm lightheaded and my body just feels kind of heavy and I'm a little unsteady on my feet.  The nurse practitioner was in this morning and said to let them know if anything changes or gets worse.  These are typical side effects of the IV colistin--it's just a very harsh drug.  

On the up side, she said my labs looked great and my iron is amazing.  I joked that it was all the steak Jord likes to cook--but we looked at my protein shakes and she said iron absorbs better with vitamin C and the protein shakes have Iron and vitamin C so she said to keep doing what I'm doing and that I take really good care of myself.  That was encouraging to hear, as I try to integrate nutrition and vitamins and supplements to help my body as much as possible and it's working.  :) 

God has poured out His grace to us through SO many people--I feel so loved and surrounded by prayers and encouragement and love--it is such a blessing to us.  Please continue to pray and also pray for Jord as he is at home.  It's so much harder being the caregiver and home alone.  Our church is providing meals for him this week which is a tremendous blessing.  He didn't sleep well last night so if you could pray for his sleep that would be wonderful.  

I got to video chat Jord this morning and Blue looked right at the camera when I started talking to her--I miss my puppies!  

Here is a short video of one of the treatments I'm doing in the hospital--this is called an IPV machine and it forces air deeper into your lungs so the medication can get in there deeper and it expands them--it's quite a work out.  

Here's a few pictures from yesterday and an encouraging quote from MacArthur.  A funny side note--it's snowing in Huntsville today so they actually canceled church services and are just streaming a pre-recorded message, so I'm not missing anything! :) I love technology! 

Jord said you gotta protect your eyes from covid! LOL He always knows how to make me laugh! 

Hospital Updates, Hello World for the First Time in a LONG Time!

 Many of you don't know that I have a blog--it's been about 3 1/2 years since I've used it.  God has brought us through a lot in that time! The biggest change for those that don't know is that in December of 2020 we moved to Huntsville, AL.  The three reasons were a wonderful church, a PCD clinic (this is huge!), and being close to Jord's parents as they age.  God has affirmed our move over and over and He made it very clear He wanted us to go when He did.  But that's another story.  

I'm currently being admitted for a flare of PCD.  I have so many people praying and wanting updates that I decided to bring out the blog again so I can update in one place and people can check on it, share, etc without me having to try to remember to text 20 different people.  So for however long God has me here, hopefully, only 4-5 days, I'll, Lord willing, do at least one update a day.  

So I started feeling not the best towards the end of a trip back home to AZ to see family and friends that I hadn't seen in almost a year.  I was there for two weeks and of course crammed a BUNCH in--even though I was on my inhaled antibiotics, I was starting to flare towards the end of November.  I talked to Dr. Solomon at the PCD clinic and he agreed to extend my inhaled antibiotics for a couple of weeks.  There is a national shortage of some of the components for it due to covid so I missed a few days before getting my continuing couple of weeks.  I still wasn't doing well after that so we decided to do IV antibiotics at home.  I was on both meds simultaneously for about 13 days and then my liver enzymes elevated and I had to stop the IV antibiotics and I immediately started getting worse again.  The clinic worked me in early and I saw them Tuesday of this past week and here I am in room S644 at UAB in Birmingham.  

The plan is to start IV colistin AND IV Meropenem. The colistin is typically a "last resort" IV antibiotic because of its nasty side effects and how hard it is on kidneys.  Dizziness, vertigo, and numbness/tingling of mouth and extremities are the top side effects and what I experienced during the infusions in April of 2016.  I have to be on continuous IV fluids to help the kidneys. The Meropenem I was on and what caused my liver enzymes to elevate over Christmas.  Hopefully, the best case scenario is that I tolerate both decently, (typical side effects are ok, but we don't want my liver enzymes to elevate or my kidneys to have issues with it) and can go home in 4-5 days and finish out the minimum 14 day course there.  They are going to hit it hard which is good to get rid of the bacteria, but knowing my body, it may not like the hard hit.  Please pray for peace and that I would take thoughts captive and not give in to "vain speculation", but to take each moment as it comes--as Elisabeth Elliott said, "Do the Next Thing."

  While here they are also going to do some imaging and a special culture to test for a nasty bug called Non-Tuberculosis Mycobacterium or NTM.  It's a bug that many people with PCD and CF will culture at some point in the progression of the disease.  It is very difficult to treat and can really tear up your lungs and is often difficult to diagnose as well.  I've been having night sweats which is not normal for me and can be a symptom of NTM.  Prayer requests in that regard would be that if it IS there, that they find it and it would be a slower growing one and easier to treat.  We won't know for a minimum of 4-6 weeks because it takes that long for the culture results to come back.  

Jord and I are doing well spiritually and mentally for this stay.  We trust this doctor and the clinic--I was hospitalized here this last April and they were all incredible.  Our church,  Grace Community Church, has been phenomenal in serving us.  We absolutely love it here in Huntsville and are so incredibly grateful to be at Grace where we are well taught and very well cared for--Jord too! 

Thank you for all your love, support, and prayers--I will do my best to keep you updated.  Hopefully the side effects will be minimal and I will be back home with my hubby and puppies soon! 

In His Mighty Grip,

Rachelle :) 

The Raging Storm

Hey everyone!
  So I finally have a surgery date--April 5th.  I saw my lung doc on Wednesday and she said I would need a two week "tune up" for my lungs prior to surgery so that means I'll be admitted to the ICU for desensitization to either Cefepime or Zosyn next Thursday, April 22nd.  There is a LOT going on in my personal life in losing someone VERY close to me to cancer.  I've prayed so much about the timing of this surgery and I asked my ENT who referred me to the "super ENT" if I could safely wait to have the surgery until May and he said, "I THINK the answer is yes." I literally left his office and got a call from the "super ENT's" office and said they had found a date to schedule my surgery for and that he was rescheduling an entire clinic day just so he could do it for me.  Well that was a resounding "No!" from God if I ever heard one.  Dr. Jacob, the "super ENT" or otoneurologist for all you medical peeps ONLY takes referrals from other ENT's so this a HUGE deal for him to reschedule clinic for me--talk about humbling.  I literally have ZERO choice in the matter but I prayed and this is God's answer, as hard as it may be to accept the timing of it all.

  Some prayer requests:

I'm having a ton of autoimmune symptoms--can't type much longer cause it's killing my fingers and elbows...even my cuticles are swollen so pray doctors can figure this one out--autoimmune anything is going to be extremely difficult to treat in me because I can't take steroids or similar medications and that is the treatment of choice for inflammation.

Pray for His peace that surpasses all understanding to guard Jord and I's heart through this entire difficult process and that we would glorify God in all our hours--especially the most difficult ones.

Pray for my witness in the hospital--that I would shine the light on Jesus in me--that in and of myself I am nothing--weak and frail but with Christ in me, the hope of glory, I can do ALL things through HIS strength and that "My grace is sufficient for you for my power is perfected in weakness.  Therefore I would rather boast of my infirmities because when I am weak then I am strong." 2 Corinthians 12:9-10....I've been listening to all of John MacArthur's sermons on 2 Corinthians 12:1-10 to shepherd my heart.

Lastly, here is some cute quotables from Hunter who was Aunt Shel's hands and feet yesterday since I hurt so bad:

"Aunt Shel, I want to pick up all the dog poop for you!"
"Aunt Shel! I love you SO much!"
Me: Do you want to go through our toys and find some toys to give away to kids that don't have toys?
H: Yes!!!! Oh let me find some RIGHT NOW!! Oh this one is for a little kid I want to help a little kid.
*Finds teething ring* "Aunt Shel! You could use this on your back!"
*Walking the dogs* "Aunt Shel, don't let them pull on you cause that will hurt you."

Talk about melting my heart!!! Love this little man to infinity and beyond and to the moon and back! Sister, it is SUCH  joy to share in loving your kiddos!



Gotta run--hurts to type but thank you prayer warriors!

In His Mighty Grip!
Rachelle (and Jordan)

Long Time No See! Doc update 3.1.18

Hello all! It has been eons since I've written and I've been meaning to write for a couple months but life has been insanely busy.  I'm going to keep this post (somewhat) short and to the point as it's how I'm updating family and friends on the latest with my ears. 

Looooonnnnnngggg story short, I have a choleasteatoma in my right ear, or a benign tumor for my non-medical friends.  It is near the sigmoid sinus which is a blood vessel that begins the jugular.  There is a chance it may not "fully" be a choleasteatoma but just infection etc, but we can't tell from the CT scan and because of where its at so far back in the mastoid cavity they can't see it from looking in my ear.  So I had two choices: wait and watch it, or go ahead with surgery and at the very least he can revise my ear anatomy a bit to make the opening bigger and easier to clean which would be beneficial and if it IS a choleasteatoma, remove it.  Jord and I both felt confident in Dr. Jacob and the decision to proceed with surgery because we don't want to risk it growing and causing damage to the blood vessel and I have been having symptoms and ear pain since last May.

Where it gets complicated and I would love tons of prayer is my lungs and the fact that this doctor DOES have privileges at UMC still but he works at TMC and has no "OR block time" meaning he can't get a specific time for surgery which means then he can't have the scrub nurses and people that know what they are doing with ear surgeries in the OR so we are trying to see if UMC will give him a start time or if my sinus ENT who works there would be able to donate some of his OR time to me.  If that doesn't work out, then worst case scenario, I would have to have the surgery and be admitted at TMC then transferred to UMC to be watched by my lung doc.  Although this sounds simple, it very quickly gets complicated, especially when you throw insurance into the mix and then the two hospitals and their rules and policies so we are hoping and praying that UMC will give him a start time and that the scrub nurses that are familiar with ear surgeries would be there because that will minimize surgery time, which is crucial because I need to be intubated for as short a time as possible because the longer I'm under, the harder it is on my lungs. 

I will also likely have to be desensitized to whatever IV antibiotic we chose so our ideal scenario would be to be admitted to UMC ICU to be desensitized, have the surgery, and remain there for however long my lung doc thinks my lungs need IV antibiotics to recover.  Please pray for God's favor in all of this and for it to happen quickly and smoothly and for insurance to see the need for admission to a typically outpatient surgery. 

Also, I won't go into details, but a dear family friend, Mark Voss, was recently diagnosed with stage 4 Prostate cancer and he is in his early 40's with a wife and two young kids.  They were missionaries in Columbia and Jord grew up with his wife, Monica.  There is also several other people very close to me that are dealing with life threatening health issues so it has been a VERY rough week emotionally for me.  I'm thankful I serve a big God and He is mighty and in complete control and reigning on His throne even though we don't understand His plans for our lives this side of heaven, but we can trust that "as for God, His way is perfect" (Psalm 18) and "I have a good portion and inheritance from the Lord.  You maintain my lot, the boundary lines have fallen to me in pleasant places." (Psalm 16) This world is full of sorrow and suffering and diseases because of sin, but thanks be to God that Jesus Christ conquered that sin on the cross and 3 days later rose from the grave and now sits at the Father's right hand and intercedes for those who repent and place their trust in Him! What precious truths and promises to cling to in the midst of difficult trials. 

Thank you for your prayers and I promise I will write more "fun" stuff soon and give you lots of picture updates!

In His Mighty Grip,
Rachelle :)

Mother's Day Musings

     Hey all...it's been awhile...life has been crazy since getting out of the hospital.  Lots has been happening--all good things, but time consuming things.  My brother got engaged so we were in full on engagement party planning mode and I did a DVD slideshow of him and Brandi growing up and then them together which was a lot of fun to do.  Then he graduated from the Golder Ranch Fire Academy and officially became a fire fighter! So proud!  I've also been seeing lots of my sister and Hunter and Gunner and my best friend Jenn, had her miracle girl, Lilyana Joy on May 1st.  They've adopted/fostered 3 boys and after 8-9 years of infertility got pregnant with Lily and she is precious!  The great thing is that I've had the energy to help my friends and family since getting out of the hospital!  I'm trying to work on that balance and not over do it which is always hard, but so far, so good.

     Mother's Day is coming up and while a blessing and fun day for many, it can be a very difficult day for some.  Those that are walking through infertility, lost a child, lost a Mom, or have a bad relationship with your Mom can all pose difficult emotions come Sunday morning.  Expectations of getting some "me" time like all the ads would lead you to believe but you wake up with a sick little one who is clingy and whiny and just wants Momma all day.  Emotions can run the gamut and pleasing family or running between different houses to celebrate all the Mom's in your life can be exhausting instead of the refreshing day you were hoping to have.  We never know what people are dealing with or walking through, so take some time this Mother's Day and reach out to someone you know who may be struggling and encourage them.  Pray for them and remind them of Christ's love for them in all their messiness of life and that He died for them and loves them endlessly as only God can.  For those who repent of their sin and place their trust in Jesus, He will bear those burdens that feel oh so heavy--because His yoke is easy and His burden is light. (Matthew 11:28-30)

     I've had a bit of an emotional week as it's that time of month--Mom and Dad suggested I use a different pan to cook tortillas and I started crying--you can pretty much guarantee that's hormones talking when that happens!  My poor hubby--he got the brunt of my "cry" day--praise God he knows me well and just held me and let me cry and when we started trying to talk about serious stuff late at night, he wisely suggested we hold off talking until we both got some rest.  I started writing a poem that night and I just finished it this afternoon.  I've been listening to the audiobook "Adorned" by Nancy Demoss Wolgumuth (HIGHLY recommend it--seriously in my top 5 books ever!) and she brought up Psalm 113:9 "He makes the barren woman abide in the house as a joyful mother of children. Praise the Lord!"  For some reason, I had never remembered that verse but the Spirit had it leap out at me.  While He has not given me my own children, He has made me a joyful spiritual Mom to many nieces and nephews that I adore.  I'm going to pick a wall and put that verse on it and then get pictures of all my nieces and nephews and put them around the verse.  Not only will it be awesome, but it will be a good reminder for me when I do have my moments when I still long for a child of my own.  Here is the poem that kind of speaks to my journey of infertility and where God has brought me today.  Enjoy...and to all my Momma friends Happy Mommy's Day--I'm so blessed to come alongside you and help you in this thing called Motherhood!

Always Dreaming

Young and so alive,

Reaching for the stars,

Endless dreams flowing,

The world at her fingertips,

Direction oh so clear.

Knowing HIS plans for her,

He sent her a special man,

She didn’t have to wait,

For the one to love her so…

‘Like a spring day or a summer night,

Your beauty is a wonder to my sight’

Wonder and awe at this feeling,

Reeling deep inside,

Oh so happy,

As they walk side by side.

The wedding comes and goes,

New wonders to behold,

Discovering life together,

Experiencing wedded bliss.

Challenges come their way,

They take it day by day,

Her dreams for little ones continue,

Then the months go by…

Months turn to years…

Waiting, waiting, waiting some more…

Oh Lord, so hard, just one, please…

She pleads through streaming tears.

Prayers become groaning too deep for words,

She’d think she was content and “ok”, 

But in the depths of her soul,

Oh so far away…

“My tears have been my food day and night”

Pray with hope as long as the desire remains,

How do you hope without the desire consuming you??

Surrounded by friends with precious little ones galore,

Oh so cute and as an Auntie she adored…

Each beautiful masterpiece sent by Him,

A precious gift from above,

“Rejoice with those who rejoice…

Weep with those who weep”

She would rejoice and laugh and smile,

And they would hold her close as tears came pouring down,

Sobs racking her body,

Oh Lord, I rejoice, but this is O so hard. 

The years continue to go by,

Hallucinations, medications, so much pain,

Moving here and there and everywhere,

Every time she’s treated,

Her head begins to spin,

Then spiraling down into the deep dark pit of despair…

BUT God…through all of this,

This journey called life,

The broken dreams like broken cisterns that hold no water,

Underneath the facade is anger,

Oh so surprised because “that wasn’t the Christian thing to do”…

But alas, she is only human,

And emotions send her reeling,

BUT God…He catches me every time…

Holds me close,

Wraps me in His everlasting arms,

Secures my future for all eternity,

When in the blink of an eye,

This miserable flesh will disappear…

Replaced, redeemed, and millennia spent with One so dear.

Who am I that I should be so blessed??

My broken cisterns pieced together,

Still marred, but whole once more…

My dreams still alive…just different…

Trusting God and His BEST plans for my life…

Still not easy,

The tears still come,

But He truly has given this barren woman a home,

And made her the joyful Mother of children…

While not borne through her body,

Or even adopted into her home,

These wonderful gifts given to friends and family,

Nieces and Nephews, oh so precious,

Fearfully and wonderfully made by Him,

To love me with sticky hands…

Excited “Auntie Shel is here!!”,

Great big hugs,

Itchy fingers galore,

Our Jesus song fixes our hurts and owies,

And He’s always there when we are scared,

We talk to Him on our purple phone,

Lots of snuggles, hugs, and kisses,

But most wonderful of all,

The love they pour out of their hearts…

A healing balm of gilead to this wounded soul.

Rachelle Thomas 

*I am connected to slow wifi right now so I can't upload more pictures, but will add more pics of my nieces and nephews when I get a better connection.* :)