Thursday, March 31, 2016

Update 3.31.16 and Happy Birthday Mom T!

Continued to be a difficult day.  The med increases my dizziness which increases my nausea and the rest is history as they say.  Im thankful for all your prayers, love, and support.  Jord was here this afternoon for me to sign the rental lease so that is officially official.  Thank you to all those who will be helping on Saturday!  Lord willing, this antibiotic will work so that means 13 days and hopefully I can get out of here.  It's shaping up to be a rough 13 days, but God is here with me and will carry us through.

     And I know it's not the kind of birthday you wanted, but happiest of birthdays to my sweet Mom T. Thank you for loving me and caring for me and packing up our house and a million other things.  I love you so much!

Clinging to Jesus!
Rachelle



Mom T and I in Sedona a couple years ago...I love you so much...so many wonderful memories have been made....looking forward to making many more!! 

Morning update 3.31.16

Antibiotic is increasing my dizziness and nausea so I've taken Ativan a couple of times. Also had to take morphine just now as my entire chest hurts really bad when I breathe in.  Hanging in there and trusting Jesus!
Rachelle

Wednesday, March 30, 2016

First Dose in the Books

First dose down...dizzy, nauseated and threw up before dose was done so it's gonna be a fun 14 days. I got one dose of Ativan already and trying to hold off but they are about to start my regular antibiotic which was making me dizzy and nauseous earlier so we'll see what happens. God will provide and He will enable me to persevere! Thanks for continued prayers!
Rachelle

Picked an Antibiotic...Ready, Set, Go!

Picked a drug IV colistin...nasty side effects. Nurse going to be with me for first dose and depending on how I react keep me here or send me to ICU
Thanks for continued prayers!

Monday, March 28, 2016

Health Update 3.28.16 Please Pray!

Hey everyone,
  If you are new to the blog, we have a serious prayer request--I'm on day 28 of a hospital stay for my rare lung disease and am not responding to very high powered antibiotics.  We are awaiting results from a second culture and will be choosing the "best of the worst" side effects in a new antibiotic that I will have to be on for at least 14 days, and will for sure be going back to the ICU initially, if not for the entire course of antibiotics, depending on bacterial resistance levels.  Jord and I really covet your prayers for wisdom for the docs and grace and mercy for both of us.  This is new territory, but not totally unexpected as my lung disease is progressive.

     If you are interested/available please contact us as there are a lot of practical needs upcoming--Jord's parents came for 4 weeks from AL but have to get back home Sunday.  My family has been helping a lot, especially with keeping someone staying overnight in the hospital with me, but there are only so many of them and work is kind of important thing they can't just stop doing indefinitely. ;)  We are moving Saturday (God sold our house in less than a month but we closed on the 15th and move on Saturday). 

     This has been a very difficult 6 weeks for us but we are reminded of the great truths of the Gospel--this didn't surprise God and He is in control of every single cell in my body.  It's hard, it breaks my heart to know it breaks Jord's heart watching me suffer (and everyone one of my family and close friends!), but I praise God everyday for the man He gave me to be my husband and lead me through these deep waters.  I'm emotional and honestly scared, but clinging to Jesus and His precious promises to "never leave me nor forsake me" (Hebrews 13:5-6 and that "water will not overflow you and the flame will not scorch you" (Isaiah 43) and He "will complete the good work He began in me." (Philippians 1:6) On the upside, everybody, including doctors, on 3NE at UMC knows me and has either heard or read about the reason for my enduring hope in spite of all of this going on...Jesus Christ and Him crucified...To God be the glory, great things He hath done. Feel free to share/forward this as we need as many people praying as possible that the bacteria would be sensitive to an antibiotic that won't damage me more neurologically. We will get those results in the morning. Thank you!

Clinging to Jesus!
Rachelle (and Jordan) 

As you know, Turtles are very special around our PCD family...this little guy's name is "Colin" :) We love and miss you Jorgen! (Jorgen was a dear friend that died from PCD complications in January in his 50's and he wrote stories about his turtle friends, "Colin and Cecelia". We miss him greatly! 
 

Update and prayer request

Blessed be the God and Father of our Lord Jesus Christ! According to his great mercy, he has caused us to be born again to a living hope through the resurrection of Jesus Christ from the dead, to an inheritance that is imperishable, undefiled, and unfading, kept in heaven for you, who by God’s power are being guarded through faith for a salvation ready to be revealed in the last time. In this you rejoice, though now for a little while, if necessary, you have been grieved by various trials, so that the tested genuineness of your faith—more precious than gold that perishes though it is tested by fire—may be found to result in praise and glory and honor at the revelation of Jesus Christ. Though you have not seen him, you love him. Though you do not now see him, you believe in him and rejoice with joy that is inexpressible and filled with glory, obtaining the outcome of your faith, the salvation of your souls.

1 Peter 1:3-9

Docs were just in--waiting on sensitivities from culture and will see infectious disease before picking a 2nd antibiotic. Pray it's sensitive to something that won't affect me neurologically!

Saturday, March 26, 2016

Health Update 3.25.16

     Got official word yesterday...I'm not going anywhere anytime soon.  My infection has started getting worse again.  I initially requested a that we do a bronchoscopy so that we could get good cultures and see what's going on in there.  There was a lot of back and forth communication with the doctors yesterday.  I finally decided to involve Dr. Knowles who diagnosed me in North Carolina and he suggested being double covered by an IV antibiotic.  The only drug that my pseudo at admission was sensitive to that is in a separate drug class than the one I'm on is Aztreonam which gave me the vestibular injury.  We decided to wait until we get the sensitivities back with a new sputum culture yesterday which can take anywhere from 24 hours to several days depending on different things.  I'm still asking more questions about a bronchoscopy so please pray for wisdom and direction for Jord and I as we move forward. Thank you for your prayers--I am disappointed and frustrated and emotional but still clinging to Jesus and very aware of His great sacrifice for me, especially on the weekend we celebrate His death and Resurrection. "Jesus pleaded, 'Father if it is possible please take this cup from Me, nevertheless not My will but Thine be done" and Paul in 2 Corinthians 12:7-10 "Three times I pleaded with the Lord about this thorn in my flesh and He said, 'My grace is sufficient for you for My power is made perfect in weakness' therefore most gladly will I boast in my infirmities that the power of Christ may rest upon me." He WILL get Jord and I through this valley and One Day He will close the door on suffering forever...clinging to these precious truths right now. Please especially pray for my sweet hubby and my family--it's so hard for them to watch me suffer! Life is but a vapor! Live well for His glory!

Here is an incredible sermon by John MacArthur on 2 Cor 12:7-10...powerful words that I will watch over and over for sure!


In His Mighty Grip,
Rachelle :)

This PICC line will be my friend awhile longer...no ETE (Estimated Time of Escape) yet, will keep you all posted.  Visitors welcome! :) 



Thursday, March 24, 2016

Health Update 3.24.16

Just did my lung function test and they did not go up at all and my sputum is thick and green again. :( I REALLY want to go home, but at the same time if I stop the antibiotic I have to go back to the ICU to be desensitized again so I need to get better before I go home so I don't just come back more sick again. Please pray for wisdom for my docs...I'm ok but Jord and I really need wisdom going forward. Thanks everyone!

Wednesday, March 23, 2016

God's "Little" Provisions

     Morning everyone!  My lungs are continuing to get better, praise the Lord!  Been getting a migraine the last couple of days when I over do it so I've got to try and watch that.  I'd love continued prayer for this area--it is singlehandedly the hardest area for me to conquer with PCD.  When I feel good or get excited or someone comes to see me I go 90 miles an hour and tune out my body signals and then when people leave or I stop to take a breath or rest, I tune back into my body signals and realize I'm in big trouble.  This is the area that landed me in here in the first place cause I was doing too much cause I was feeling good.  I was in the hospital this exact time last year, so apparently my over zealous personality likes to enjoy the AZ weather this time of year and says yes to several too many things.  ;)

     This is the third time I'm working on this blog post--I had one all written and somehow lost all but the first paragraph, but was dizzy and had to stop--so hopefully this one will actually make it to "publish".  I originally started this with something specific in mind of something "little" that God provided but I can't remember what it was so instead I will list some awesome ways He has provided this week for us in practical ways:

*We got a refund from a medical bill last year that we weren't expecting--that's always nice!

*I got a second Aerobika (handheld airway clearance device) today cause my other one wasn't working.  One nice thing about the hospital is it's one big bill

*We med our out of pocket max weeks ago at this point, so everything from here on out will be 100% covered, which is a TREMENDOUS blessing, especially in light of recent years.  (We spent over $13,000 out of pocket last year in medical expenses!)

*God provided Nicole and Alyssa to be here right when we needed them the most--they walked our dogs everyday, brought them to see me, helped with laundry and dishes before Mom and Dad T. got here and came and visited me.

*Mom and Dad T. drove in from Huntsville, AL to help us get packed, cook meals, stay at the hospital etc.

*Mom, Grandma, Aunt Dawn, Dad T.,  Shirley,Jim, Braelyn and Jord have all stayed the night with me since I got the vestibular injury so I'm not alone at night.

*Numerous visitors and calls and prayers and encouragements.

     We were never meant to walk through these valleys alone and we could not do it without all of your prayers, love, and support.  Please pray for perseverance for the last 3 days--as I'm feeling better, it gets harder to stay here--this is my longest hospitalization ever and we are VERY ready to resume "normal" life together as we prepare to move shortly into a new season of life and selling our first home of 10 years (although we moved away for 4 of those years).

Getting dizzy so need to run, but please pray for two of my friends I met online in a support group for severe rxns to medications--they are in very dark places right now.  I have been able to talk to one of them and listen and encourage her that there is HOPE and with Christ she can conquer the anxiety and depression and insomnia along with medication and counsel--the same things God used to bring me out of those dark places.

Here is a link to a fantastic Q&A about Suffering and the Sovereignty of God that was a planned a year in advance and providentially took place shortly after the devastating earthquake in Haiti several years ago.

Praising Him!
Rachelle :)

Meet "Dr. T." (named after one of my docs cause he asked what it's name was and I didn't have one yet lol) that my Grandma had made for me! So soft and cuddly! The lady that made it hand makes them!  Let me know if you want to get one made and I'll get you her information.  :) 

Sunday, March 20, 2016

Prayer Request for Migraine

Would appreciate specific prayers for my migraine to go away today. The vestibular stuff  usually had migraine like symptoms without the headache but now I'm getting the headache too.  Also my sputum has gotten thicker and green the last two mornings...hoping we are  just shaking up old stuff but please pray for clarity and wisdom for my docs. REALLY want to get out of here in 6 days, but trusting God with that and taking it one day at a time. Thanks everyone!

Saturday, March 19, 2016

Thank You to my Incredible Hospital Staff and Team of Docs :)

     You have all heard me say briefly how thankful and relieved I have been for the team of doctors God placed around me as well as the incredible staff here on 3NE and in D3W ICU.  If you have spent any time in the hospital at all you know how much of a difference a good nurse/doctor/pharmacist/tech/RT/cleaning etc or bad nurse/doctor/pharmacist/tech/RT/cleaning can make in your stay.  Jord teases me that I can talk to anyone, but I figure if I make friends with everyone involved in my care life goes much smoother!  They have all gone above and beyond here and I literally have gotten half of their phone numbers or am friends on facebook now and lots of them have checked out my blog.  Many have seen the business card I finally made:


     And then asked, "Does anyone ever pay you to come see your horses/or ride??"  When I told one of my docs (I won't tell which one on here cause I'm already gonna be in trouble cause the nurses and other docs are teasing him!!) that I would take him out to see my horse (Is that OK Momma??!!) he said he was afraid of horses.  ;)  I know many people are simply because they are so big and they haven't been around them--they don't see what gentle giants they are!

My 2 year old nephew, Hunter, giving Buddy a hug. :) 


As a kid, I would take him to a grassy spot and lay on his back like this and read a book while he ate grass, or I'd lay on his back and look at the stars at night. :) We have such an incredible bond of trust!

My first ride last year after starting my vestibular rehab--you can't tell in the picture, but I was feeling like I was on a storm tossed sea but Buddy took the turns so gingerly and KNEW I wasn't myself...horses are simply AMAZING! 

Loving on "My Old Man" 

Laughing because Mom tried to do the same thing on Goldy and he took advantage of it and put his head down to get some weeds and she almost fell off. ;) 

During my third Psychosis in 2013...seeing my horse always made me feel better!

Mom holding me on Rammy when I was probably 2. 

When Buddy and I were MUCH younger...19 years younger to be exact! 

     As usually happens when I mention horses I got a little off topic....back to the incredible staff and team of people around me.  :)  I just wanted to publicly thank each and everyone of you--I would try and mention names, but I would forget someone and feel bad lol.  Being in the hospital for 19 of the last 30 days isn't exactly the way I planned my February and March, but God obviously had other plans, as often happens.  Everyone here that has helped me in any way, shape, or form, please feel my heartfelt thanks!  I love each and everyone of you!!!  Living with PCD has many challenges, but there are also many blessings--one of them getting to meet incredible people from all over the world--that is one of the awesome things about being in a teaching hospital.  I know some people don't like to be here cause you get asked a million questions, but it presents such a wonderful opportunity to educate more people about PCD and rare diseases in general.  My hope is that as they go on and establish careers in the medical field that they will always have in the back of their minds that when you hear hoofbeats, most of the time it is a horse, but every once in awhile you get surprised by a zebra.  I am that zebra in a horse world.  Doctors--THANK YOU for taking the time time to truly listen to me and respect the fact that I have lived with this for 32 years and have a good working knowledge of my body and what it can and cannot tolerate.  Thank you for listening and contacting my psychiatrist when I was headed to the ICU so we had a back up plan in case it went poorly and you had to give me steroids--praise God we didn't have to use it, but the point is you LISTENED and had a plan at the ready.  I no longer feel like I have felt for the last 32 years--that I fell through the cracks and balls got dropped and I ended up with another serious adverse rxn and more brain damage.  I can tell you right now, you are right up there with UNC in Chapel Hill in Raleigh, NC where I was diagnosed and that is saying something because they are the leading research center for CF and PCD.  

     Nurses and PCT's: Thank you for loving on me--holding my hair while I threw up, getting me wash cloths, explaining the ICU process so it made it less scary, reacting quickly, and making me and my family feel as comfortable as possible for being in the hospital.  I know you probably have gotten me 100's of cups of ice water at this point lol and I truly appreciate it.  For helping me walk, listening to me when I'm emotional and crying, and truly CARING for me.  For singing me Happy Birthday--it was all I could do to keep from crying in that moment.  For signing my birthday banner and moving me from room to room--with all the stuff I have here moving once was a feat--but 5 rooms this time around to make me more comfortable is going above and beyond.  Pharmacists--thank you for explaining things to me and making sure I understood and verifying all my home vitamins so I can still take things that help my body fight the infections.  Cleaning friends, thank you for keeping my room clean--I know you may often go over looked but I REALLY appreciate you and miss you the most when I go home--my trash doesn't magically disappear there lol. 

     I want you all to know that I praise God for each and everyone of you and will spend eternity thanking Jesus for you and your selfless service to me.  I love you!  And feel free to come hang out anytime in the next 7 days....and my hubby doesn't know it yet, but maybe we could throw a "hospital open house" when I get better!  I've been making LOTS of plans with LOTS of people sitting here in this room, so we'll see what God's plans are!  I'm praying that next February we can have some sort of Rare Disease Day event so keep that in the back of your minds...and I'm still praying one day I can have that Equine Therapy Stable because horses are the best and I want to share them with everyone of you!! :)

My Mom's college roommates son, Nick, who was my inspiration for Equine Therapy.  Goldy was such an incredible horse--we had to put him down several years ago at the ripe old age of 33...we miss him SO much!


Praising Him for ALL of you!
Rachelle :) 





  

Friday, March 18, 2016

Prayer Warriors for my PCD Friend

Prayer warriors you are desperately needed for one of my PCD friends...after 5 years of trying to get pregnant she finally did but is being hospitalized and baby is in distress, trisomy, and 20 something weeks along I think. Please plead for a miracle...my heart is breaking for her!

Thursday, March 17, 2016

Encouraging Messages and Update :)

     First of all, my sputum has officially turned from green to yellow!!!  Not something most people get excited about, but this is great news for this girl.  I should be on track to be discharged on the afternoon of the 26th--just starting to go a little stir crazy here now that I'm feeling better and don't feel like my lungs are being stabbed all over constantly or throwing up uncontrollably.  I've been able to get off the morphine for the pain and the heavy duty drug Ativan for the nausea--it literally just knocked me out and made me sleep so I wouldn't throw up--at one point I was having to get a double dose because the nausea was so out of control.  Amazing how "little" improvements like that make such a big difference in how you feel.

     I am now focused on vestibular rehab once again--last year it took 10 weeks of outpatient rehab and I was unable to drive for 4 months.  This is the third time we've walked this journey so knowing what to expect is very helpful--and at the same time can be discouraging as I know it is going to be a long, slow road to get back to where I was prior to hospitalization when I was clocking 13,000 steps chasing my nephew, Hunter, around after Jenny had Gunner.  Speaking of which I FINALLY got to talk to that cutie through google hangout yesterday.  The sound was messed up on Mom's computer and I could hear them but they couldn't hear me and he says, "Sorry I can't hear you"....talk about melt your heart!!  Those boys light up my life and forever have my heart!



     I'm excited that Lord willing, I will be leaving the hospital hopefully on the 26th and moving into a house in Red Rock on the 31st.  Please pray for all the details, especially finances, to come together for that.  We have closed on our house and God has already provided in amazing ways, and I know He will continue to do so--we just want to make sure we are in the house that HE wants us to be  in and not get in over our heads just because it's a beautiful home with lots of room to have people over and for Kerstin to have her own space to escape to when she wants to.  :)  The house we are looking at also has a humungous kitchen which is awesome with all of Kerstin's appliances and mine with my new diet it will leave plenty of room for meal prep and fun cooking times, especially with my sister and Jenn being within walking distance of it!  Room for my 5 nephews to come run and make a mess...5 boys under 3---bring it on!!! :) Oh yeah--don't forget Roxy and Crash too--I LOVE people (everyone who knows me knows that lol) and when I can't go places, we can still have people come to us and it will be much easier being in Red Rock for that to happen as Jen, Jus, Kyle, Jenn, and Jeremy and my 5 nephews are all in walking distance, my parents and Aunt and Uncle (and my horse!!!!) are 10 minutes away, Tom and Candy and two more nephews are 15 minutes away and I'm closer to doctors and Jord is MUCH closer to work.  Instead of a 45 minute drive one way it will be about 20 minutes.   All reasons we chose to sell our first home of 10 years--very bittersweet as we LOVE our neighbors and the views of the Catalina mountains but God made it VERY clear this was the right decision in selling our home when we sold it in a month with a cash offer.  Mom and Dad T. have sold 8 houses and never had a cash offer.  It also went to a wonderful Christian couple who are snowbirds that volunteer for the Wycliffe center--nothing makes my heart happier than passing our home onto someone who is using their retirement years to work for the Lord.  It reminds me of John Piper's words in his book "Desiring God"...he tells the story of this couple that wanted to retire at 50 and travel around the country and collect sea shells--at the end of her life she offers God her shell collection--"here are my shells Lord".  Not that there is anything wrong with collecting sea shells or retiring at 50 but if the focus of your life is on anything but Christ Jesus and Him crucified you are doing nothing but storing up wrath for yourself on the day of judgement--heed His call today my friends!  Repent of your sins and trust Jesus with your eternal life--the Christian life is not the easiest life, but it is the ONLY life that leads to heaven and there is no greater reward than being united with Jesus the God of the Universe for all eternity!  O how my heart longs for THAT DAY--not just so I will have a resurrected body that works perfectly--never hurts or gets tired or has energy limitations to wrestle with--but to forever be free from my sinful heart and the presence of sin--what glorious Days those will be!!!  

     Some encouraging messages I've been listening to--you'll notice they are all Joni Earekson Tada but that's because listening to guys voices makes my vertigo worse and girls voices calm it down so Joni has been my "go to" this hospital stay when I need encouragement to keep putting one foot in front of the other--I pushed hard and was able to do 2 laps at the same time around the unit today--I was exhausted and tremored quite a bit when I got back into bed, but how good it felt!  Here are the links--I hope they encourage your heart as they have mine!  






Those should keep you busy for quite some time--this is what happens when I spend 7 days in the hospital, go home on continuous IV for 10 days, then come back to the hospital for 10 more days and have 10 more days to go (prayerfully keeping in mind that's as long as my body continues to cooperate--I am praying and hoping I will be discharged on the evening of the 26th, but trusting God and preparing my heart if He has different plans for me!).  If you have any particular question, spiritual or otherwise, please feel free to text or call or facebook or email or comment on my blog your questions or if there is any way I can be praying for you or if I can recommend a resource for you--I love to read and God has given me lots of time for that over the years because of my hour long breathing treatments three times a day.  Mom T. jokes around that she uses me to sift through the "OK" books and the "Must Reads" cause she doesn't have as much time to read as I do.  :) Also, I have LOTS of great song recommendations!! :) Feel free to use me as your resource--it gives me great joy to serve in that capacity when God has me here at the hospital.  

Praising Him!
Rachelle :) 

Figured out that if I wear my headphones and play music it constantly it drowns out the dinging of the nurse call light so until I get transferred to another room they will be permanently affixed to my head. ;)



Wednesday, March 16, 2016

Turtle Steps

Made it through the night without morphine and ativan so we are making baby steps in the right direction...still coughing up tons of green junk but I'm only on day 4 of antibiotics so hopefully that will start changing soon.

Watched this wonderful message this morning by Joni Eareckson Tada :)

https://youtu.be/Nzi94MGCM8Y

May you be blessed and encouraged by it as I am! Thank you for your continued love prayers and support!

In His Everlasting Arms,
Rachelle :)

Tuesday, March 15, 2016

Back to the Floor

It's been a busy and hard couple of days. Been super nauseous so even looking at my phone is hard. I have continued to receive wonderful care here and love all my docs and nurses and respiratory therapist. A great surprise came last night when I learned another girl with PCD is on the floor as well. We exchanged numbers and we are going to talk... I'm so excited!  I added her to the PCD Facebook group which she didn't know about... That's so exciting that I can help someone else get connected because I know how isolating it can be to think you're all alone. It has been so sweet for God to show me again and again the purposes big and small he has for me here. Another of my respiratory therapist daughter has heterotaxy which is a firm situs inversus...her organs are flipped and not just in the wrong place but her valves are on the wrong side etc.. She has never been tested for PCD so I gave her mom  my business card with the website. She is on the heart transplant list and 12 years old. Please keep her and her mom in your prayers. I'm going to meet her as soon as I'm well enough to not contaminate her. It's been so sweet to see God answer prayers big and small and even though the desensitization was hard it worked and hopefully this medication will take care of the bacteria that are growing in my lungs and I can get home. I will be here for the duration of the antibiotics as they want to watch me closely for any reaction. We will do pulmonary function test at 7 Days on the antibiotic to see how I'm doing and continue to go from there with a plan of care. I cannot tell you how incredible this team has been and how thankful I am to have the team that I have needed for so long. One of my fellow PCDers sent me a care package that I got yesterday when I was having a bad morning. I'm so grateful for my PCD family and all my friends and family here that are supporting me and Jord. We officially closed on our house yesterday and have a rental that we are looking at so pray that everything will go smoothly with that and that we could get moved in there. God has been so gracious to provide. Bill and Cathy  made it in from Huntsville and Cathy is cooking up a storm and packing it up and dad is going to stay the night with me when no one else is available. Nicole and Alyssa have been walking our dogs every day cleaning her house doing my laundry and coming here to visit me. I have so appreciated our friendship and it's so neat to see how God provides exactly what you need when you need it and there's always someone available. Braelyn, my cousin, has been on call and helped me out a lot already. Justin took me outside in a wheelchair so I could get some sun for the first time in a week and we are working on our bucket list for when I get out of the hospital. My sister is going to come by tomorrow and we're going to try to do a Google Hangout with Hunter and Gunner... It's been so hard to not be able to see the boys because Gunner is so little we can't risk him getting anything. I would love prayers that this nausea would get under control. I've had to take some pretty heavy-duty meds to stay out of pain and the nausea. The meds just knock me out at night.

     Thank you for your continued love prayers and support. Pray especially for Jordan as it is so hard for him to watch me suffer. I will be here for sure for the next 13 days of the antibiotic and would welcome any visitors to help pass the time. :-) my room number is 3810 on  3NE Love you all very much!

In His Mighty Grip,
Rachelle :)

Saturday, March 12, 2016

Desensitization Explained

So a few people were asking questions so I figured I'd explain the procedure.  They started at 10 AM and gave me miniscule doses every 15 minutes.  Each hour they upped the dose. This is to trick your immune system into thinking it's not allergic to the medication. I still got itchy so they gave me some Allegra but as soon as they upped the dose the itching kicked in again sending my vertigo and tremors into overdrive.  I threw up and they had to give me some Ativan, a strong med that is like a short acting Valium and relaxes your body.  I was able to get some sleep and make it through the rest of the doses to officially be "desensitized".  However, my first normal dose will be at 9 tonight and the current plan is to give me that in the ICU so I'll stay overnight here again just to be safe. Thankful for the wonderful care I am receiving. Pray my LFT's start to go down otherwise we are going to have to change my psych meds that I'm on for sleep and that can get tricky. RT is here so gotta run. :)

Made it!

Made it! :) Still a little itchy but it's tolerable cause the Pseudomonas needs to go ASAP.  Vitals every 15 min over the next hour just to make sure, but then back to the floor. Thanks for prayers!

Update 2pm

Ativan helped...pushing through the itching so we don't lose the progress.

Update 1pm

Threw up as vertigo got worse so gave me some Ativan and might give me more Allegra. Really critical we keep going otherwise lose all the progress.

Itching Increase

Started itching pretty good with the first dose of the last bag. Calling team to see what to do.

Update

Doing ok so far...got a little itchy so they gave me some Allegra

Off to the Races

And we are off to the races! I asked Jord to take a pic and he took a lot lol Laughter is great medicine!

ICU and Starting This Morning

Got to the ICU and settled about midnight.  Woke me up at 6:30 to do the liver ultrasound.  Jord is getting ready to head down here and then we should be getting started.

Friday, March 11, 2016

Update

Patient from ED got room so waiting for another patient to get transferred. Desensitization will be in the morning now.

Finally have an empty bed

Just heard they have a bed in ICU....D3NW for those of you that know the floors here. ;) So hopefully get over there within the hour. Thanks for prayers!
Rachelle :)

Liver Enzymes

So my LFT's are elevated again.  They are going to get another ultrasound and more blood work after they put my PICC line in. They are really confused as to why they are elevating as I'm not on any liver toxic meds.  This also puts me in a tricky position if I do need steroids in the ICU b/c they can't raise Depakote or Seroquel to counteract a rxn because of my LFT'S. If I do need steroids they will have to give me a med called Lithium that is not liver toxic.  They called Dr Fehr, my psychiatrist so everyone is involved in my care before I even head to the ICU--the care I am receiving here is phenomenal and I have total confidence and trust in my team. So many answered prayers! Be praying for 1) No rxn and 2) Wisdom for best decision if there is a rxn. Thanks everyone!
In His Mighty Grip,
Rachelle :)

Thursday, March 10, 2016

Desensitization

ICU and desensitization probably tomorrow. 2 week stay. Growing staph too so gonna try Vancomyacin for that if we need to treat it. Probably starting with another PICC cause they don't like to do ports when you are actively sick. Waiting though to confirm blood cultures are negative for sure. God has shown His love and faithfulness in tremendous ways through all of you! I'm a little nervous as to how my body will react, but for the first time in my life I have an INCREDIBLE team of docs around me that I trust and don't have to second guess.  The care I am receiving here is phenomenal! 3NE staff I love all of you and praise God all the time for you!  If I have to be stuck in a hospital, I'm thankful it's with all of you!

In His Mighty Grip,
Rachelle :)

Tuesday, March 8, 2016

Re-admitted

Doc says pneumonia...gonna get a CT scan, PICC line out, port in, see infectious disease doc, allergist, and see what meds we can figure out...will likely end up in ICU being desensitized to something at some point. Trusting God and at peace with the team around me. Thank you for all your continued prayers!

Health Update 3.8.16 and Mountains of Faithfulness (repost)

     Hello all...I would love prayers today at 11...I am seeing my lung doctor to see if we can figure out what's going on and why I'm not getting better.  Last night my hubby and I took a dear friend, Nathan and his brother Daniel out to dinner at Red Robin.  With my new dietary restrictions, eating out has been an experience, but Red Robin is awesome at accommodating restrictions and our waitress, Tracy, was awesome.  :)  I was still in a fair amount of pain, so I broke down and filled a prescription for Tramadol.  It's amazing how you don't realize how much pain you are in until suddenly it's not there and you are like, "Oh man, that really hurt."  

     The night was going just fine--I could feel the pain med--was a little light headed and if I moved too fast I got dizzy so I was just taking it easy.  I took my night time meds, along with some vitamins, and then it was all over--my body did not like those on top of the pain med.  I tried really hard not to throw up, but by the time I realized it wasn't going to happen, I barely made it to the bathroom.  I aimed for the toilet, but it went everywhere---so gross!  My poor hubby---he was already in bed and was exhausted from a long day and he hasn't been sleeping well and I had to wake him up to that--and I couldn't physically clean it up so he had to do that on top of helping me get back to bed, getting me ginger drinks, rice crackers, etc.  I woke up to go to the bathroom this morning and needed help cause I was dizzy, so he had to get out of bed for that after the dogs had just gotten him up to feed them.  He told me he tried to clean it up and got a lot of it, but he was going to throw up if he kept cleaning so the door is closed right now and awaiting me when I can work up the energy to try and get it cleaned up before I go to my appointment this morning.  The life of a caregiver!  It's hard--so if you see Jord, encourage him!  He is truly my greatest earthly treasure!  I've got a post brewing in my mind to share our love story and just how well he cares for me and how God loves me through him in so many ways.  I am so blessed! 

     Please pray for clarity and wisdom at the doctor's office today.  It's day 15 of IV and with the pain getting worse instead of better that's not good.  I'm not sure what the plan will be going forward, but thankful I know the One who does.  I finally have a great team of doctors around me and I'm not having to fight for the care that I need--I cannot tell you how refreshing it is to be able to trust your doctors completely and not second guess the treatment plan.  The home infusion company has been an awesome answer to prayer as well.  My sweet nurse friend Judy worked it out to where they could work with my insurance so I could get the best care with home health nurses that know me and the pharmacist knows me and they all take wonderful care of me!  It's been absolutely AMAZING to see bills to my insurance for over 10K for the home IV so far and our part owed is $0.  Such an incredible provision from God!  We are still paying off last years medical bills so I do not take this gift of amazing insurance lightly!  Such an answer to many prayers prayed for us!

     I'd better sign off and do treatments now, but I shared this morning the analogy of Mountains Papa gave me when he was dying so I thought I would repost his poem along with an old blog post:

     HERE is a link to the whole post if you would like to read it.  It's a short post talking about how God uses the analogies of mountains all the time.  Here is the poem I wrote when I was 16 after my beloved Papa died from Melanoma.  It came from a moment when he knew he was dying from the cancer--he was crying and told me, "I've been thinking about what to write in that journal you gave me...Life is like a series of mountains--you get to the peak of one, but you are just at the base of another.  You are born, but you are just at the base of life.  Then you learn to sit up, but you are just at the base of crawling.  Then you crawl, but you are just at the base of walking."  These words are forever emblazoned in my mind and have helped shape the woman I am today.  16 years later and I miss him so much.  Have a blessed day my friends and remember to hug your loved ones! 

Mountains

The green valley’s amid white-capped mountain peaks,
The joy of birth, a new life in this world,
Barren lands among falling boulders sweeping down the mountainside,
The harshness and pain of death, losing the one you loved so.

Climbing mountains all your life,
Mt. Everest a major feat,
Reaching the top of a hill, unnoticed at the time.

Working your way through life,
Graduation and embarking upon your new world,
Learning to breathe, instinct led you through.

Facing challenges,
Boulders sweeping you off your path,
Accomplishing your dreams,
Seeing the peak of a mountain past,
But alas, you are just at the base of another.

Cancer raging through a family, tearing lives apart,
A brave man, crying, telling his family not to worry,
For he has just reached the peak of his last mountain,
The last of a series of mountains, the mountains called life.

Rachelle Thomas 

Added a lot of pictures of life...enjoy! :)