Celebrating being DONE with IV Antibiotics!!!

 Hello all,

  I messaged the doctor's office first thing Friday morning as Jord and I talked Thursday evening and the side effects were just mounting.  My lungs were feeling great and my mucus production was better than my baseline and I was itching more and more even on Allegra and Zyrtec and the dizziness was increasing with each dose of Colistin.  The clinical nurse coordinator called me pretty quickly and said she had talked to Dr. Solomon and that he agreed I could stop a few days early.  I was supposed to go through tomorrow.  I had just finished a dose of Colistin and I hung up the phone and practically ran to the bathroom to deaccess my port lol.  

 I already feel SO much better!!  I still have the vertigo and my eyes are super light sensitive so it will probably be a bit before I can drive at night.  I was able to a friend's house yesterday out on some property and enjoy the outdoors, all bundled up cause it was only 27 degrees, but it was lovely.  We came home, let the dogs out, and the headed to a 60th birthday party for a friend from church.  I was definitely exhausted at the end of the day but it felt so good to not be hooked up to something!  Today I made it to church and wore my sunglasses inside--I had to sit down towards the end of worship as it was overload for my brain and it took a bit for me to be able to focus on the sermon.  My right eye will hurt and I'll get a focal headache right above it from fatigue.  I very much enjoyed every minute and also got some newborn snuggles to boot!  We had lunch with Jord's parents after, took a nap, and then walked the pups together.  It has been a beautiful, joy filled weekend and my heart is full!  Our church continues to amaze us in their love and care for us--they brought us meals for two weeks and then a group of ladies did a freezer meal exchange that I was supposed to do but got sick and they gave us some freezer meals this morning at church.  So blessed!

 Looking down and tilting my head down immediately sends me spinning like crazy, so washing dishes and cooking has been hard.  Thankfully, I was able to wash some dishes and cook Jord eggs with some breaks--it feels so good to be able to do simple things that we so often take for granted.  Turning my head in any direction without also turning my body makes me extra dizzy so I've been slowly working on that to re-train my brain.  Looking to the sides isn't terrible, but looking up and down are still pretty difficult.  I have noticed bits of improvement each day though--I was due for Zofran at 12:30 today and I haven't taken any and I'm not super nauseous!  So thankful for these baby steps!  

We are pretty sure Jord passed his kidney stone, praise the Lord! He has been able to be off pain meds since Wednesday--praising the Lord for this too!  This week we have a couple of doctor's appointments but it will be getting back into a routine as I continue to heal from the side effects.  I would love prayers that I wouldn't over do it as is often my temptation.  I need to set alarms and rest in between so I don't do the famous, "just one more thing" and then all of a sudden crash.  

Also, last weekend, our Pastor spoke at the Truth in Love  conference on Suffering.  He preached on Romans 5:1-5 and it is very encouraging.  Here is the Link to it, "Rejoicing in Suffering"  Other speakers at the conference include John MacArthur, Steve Lawson, and Paul Washer.  I'm looking forward to going back and listening to their sermons too--something to listen to while I rest.  :) 

I'd better sign off for now as my brain is giving me those little warnings of too much focused screen time.  Here are a few pictures from the weekend! 

Mom always decorates so fun!

She's such a great hostess! :) 

I actually took time to curl my hair this morning lol 

Some of my favorite verses....well truth be told all verses are my favorite lol 

So very true!

Overall, a Good Day :)

 Today started out a bit rough--my Zofran ran out before I woke up and even though I took it as soon as I got up, I ended up throwing up and dry heaving--one of my least favorite things lol.  I waited about an hour but was still pretty nauseous, so I took some more Zofran because at that point I was pretty certain most of it came back up and after a bit I felt a LOT better.  I had to switch my IV schedule around a bit to where I'm hooked up for longer periods of time during the day but the first night when I was going to have to get up at 10, 11, 12, and 1, Jord woke me up at 11 and I had slept through my alarm going off for an hour.  Jord said I needed to figure something out because obviously between 10pm and 3am is not a good time for me to be doing stuff with my IV in my grogginess and it wasn't safe.  I made it through the doses at night and then when I got up I re-configured the schedule.  I don't know how all you Momma's of littles do the no sleep thing--God's sustaining grace I know, but it's definitely gotta be hard.  

I was able to walk the dogs almost two miles today.  The vertigo is still there 24/7, but I am noticing improvements each day as to how much I can handle or things that were hard the day before are easier or I can watch a different type of show or tolerate more screen time.  The walks outside help a lot.  I did start to get a little short of breath towards the end of the walk but I just slowed down and was able to finish fine.  A lot of you know that Blue was given to me when I was hospitalized when my Grandma died and she's from a rare Australian Shepherd bloodline specifically bred for therapy.  When I got her as a puppy, I was in the midst of the grief of losing Grandma, my cholesteatoma surgery not happening, 24/7 migraine and vertigo for months, and not a full blown psychosis, but a "mini" one if you will.  Needless to say, it was not the best time to bring a puppy into our home, but bring her home we did.  She quickly ruled the roost and developed a lot of bad habits.  After Crash died, almost two years ago exactly, she got fearful, and her and Roxy would go bonkers barking when they saw other dogs.  When we moved to Huntsville and had to live in the apartment for 6 months, that just exponentially complicated the problem.  She was surrounded by noise and other dogs and was just on edge and couldn't relax.  We even hired a professional trainer to try and help us through the rough patch, but nothing we did seemed to help.  Needless to say, it was a very sanctifying time lol.  

I went back to watching Cesar Millan and back to my roots of communicating with the dogs as a "pack leader" and setting "rules, boundaries, and limitations" and making sure they are getting "exercise, discipline, and affection" in that order.  Being in the house since July and out of the apartment, Blue is finally starting to calm down a bit and she has responded so well to the training.  I've worked really hard at it and we can walk by yards with barking dogs and neither dog will bark--I even had a neighbor walking tell me that "your dogs are very obedient."  That was definitely such an encouragement!  Blue is incredibly intelligent and I've been watching lots of YouTube videos of different trainers as well and been slowly introducing different commands and tricks and working on re-training bad habits, like barking crazily at the vacuum cleaner or grabbing the broom and playing tug when I tried to sweep.  She does this because as a puppy in my head I was going to teach her how to "help" me with these things and let the broom and mop and vacuum be a toy--definitely NOT the way to train them to help you lol.  Anyway--lots of lessons have been learned and I'm so happy with how well she is doing.  It's also amazing how extra attentive they have been with me being sick the last couple of months.  Animals are just such incredible gifts from God! 

I'd better sign off before my screen time runs out and I end up not feeling so hot.  Jord and I continue to be blown away by how well our church is serving us--a friend brought me lunch today and did my dishes and then cleaned up the entire yard full of dog doo--it had been awhile since I had been able to do it so it was really bad.  So incredibly grateful for the ways they are pouring into us.  God is so kind.  

I Feel Like I'm Starting a Medical Supply Store

 Good morning! 

  I got the delivery of my second IV antibiotic last night.  I was doing the inhaled in the meantime because the infusion pharmacy didn't have the IV colistin in stock because it's a last resort drug.  I seriously feel like I could start a medical supply company lol.  They also didn't send a pump so it's gravity fed and with my port the pharmacist said he didn't know how successful they'd be doing two antibiotics at once like they did in the hospital so my schedule until the 31st is going to be a bit crazy.  I have alarms set for everything so I don't forget something.  

   Jord and I had to literally sit down and try to figure out when I could do stuff cause one antibiotic is every 8 hours and takes 3 hours to run.  The other one is every 12 and takes an hour but I also have to run saline fluids for an hour before each dose to help my kidneys so it got very complicated very quickly and I still have to call the pharmacist to double check and make sure that a 6 hour gap for the every 8 hour med is ok because it's literally impossible to do without running into that three hour run time.  As we were exhausted last night when the delivery came at almost 9pm, we both got a little overwhelmed with the schedule as my sleep is going to be very interrupted and that is a hard thing, especially for Jord, because of the history of what happens when I don't get enough sleep.  I either get sick or in the past it has turned into starting down the road to psychosis so I'm going to be very intentional about resting and napping when I can in between everything so I get the rest I need to heal.  This morning we awoke refreshed and reminding ourselves that it's only for 6 days and we are SO thankful I get to do this at home instead of being stuck in the hospital for the entire course of treatment.  

  Re-learning how rehab with the vestibular injury goes I was tempted to be frustrated yesterday as I was wanting to do some research for a close friend who is going through a very difficult trial right now.  I was on the ACBC website (Association of Certified Biblical Counselors) searching through resources but I had to stop because being in front of any screen for any length of time tires my brain out very quickly and I start to get a headache and feel nauseous even through the Zofran.  I had to remind myself that it's a season and this is what God has for me at the moment and I need to rest when my body calls for it so I can heal.  I'd appreciate prayer for my heart in this ongoing battle.  

  Jord went to a urologist yesterday and they said since it's moving he is ok and they gave him more pain meds and the medication that keeps the tubes more open to help it pass easier.  They also sent him home with what looks like a funnel with screen mesh in the bottom of it because they want him to try to catch it. He was a bit taken aback by that LOL.  Welcome to the medical fun stuff honey!  In all seriousness, I have been seeing just a fraction of what he goes through watching me hurt and not being able to fix it--it is not a fun feeling, but something else we can trust the Lord with.  

I'm gonna sign off before my eyes get all crazy on me.  Here are a couple pictures :) 

IV colistin and Saline fluids

My trusty IV pole...it needs a name!

Flushes galore!

Heparin and alcohol swabs and caps

More saline flushes and Blue's tail lol 

Supplies for labs and dressing changes

Roxy loving on her Momma

Blue doing what Blue loves best--playing with that ball! 

  

Vestibular Injury, but had a Good Day Today

So this will be short as my eyes have taken in all the information they want to take in today.  I was able to make it to Grace Life, or the Sunday School part of church this morning.  The class I am in is studying Psalm 73 and it's SO encouraging.  We said hi to some people and then came home to livestream church since my brain gets easily overwhelmed with lots of activity.  

I took a nap and then we took the dogs for a walk.  It was a beautiful day out today and so nice just to be outside in the sunshine and with my hubby and puppies.  I'm taking Zofran every 8 hours and that is allowing me to function, while I utilize my vestibular rehab skills from the past.  So thankful I have these coping mechanisms.  The vestibular system is your balance system and consists of your eyes, ears, and sense of touch that communicates to your brain where you are at in space.  Check out THIS Link  if you want to learn more about it, but essentially the antibiotics damaged the system and my brain has to re-learn the new signals that are different with the damage.  The brain truly is fascinating--and just testifies to the amazing God we serve.  

Gonna sign off for now as screen time is difficult at the moment.  Here are a couple pictures from our walk today. :) 

Dizziness and Nausea Return at Home

 Hey everyone!

  Just a quick update--I made it home yesterday afternoon and quickly realized that I did indeed have a small vestibular type injury.  My brain quickly got overwhelmed with all the "new" sights and sounds and moving around more than in a tiny hospital room.  I finally gave in and took some zofran last night before bed but I was in bed and it was hard to think/respond to Jord's questions and I even had some slight tremors.  

After sleeping good, I got up to start my IV and make my fizzy and protein shake and then quickly lost the getting sick game so I've taken another Zofran this morning.  I don't like to take it cause it makes my head fuzzy but between that and throwing up, I choose a fuzzy head lol.  

Jord still has not passed the kidney stone and last night he was in a bit of pain as he didn't take the meds soon enough.  I'm getting a very small glimpse into how hard it is to see the one you love so much in pain and there is nothing you can do to help alleviate it.  Even in pain, he still cared for me so well getting me meds, a cool washcloth, helping me to the bathroom as I couldn't walk on my own, unpacking my med box when they got here and so much more.  I will praise Jesus for all eternity for my sweet hubby--he truly is my greatest earthly treasure! I am SO blessed!

Some prayer requests would be that I would use my vestibular rehab coping skills to help my brain adjust sooner rather than later, but that I wouldn't over do it and end up in bed unable to function.  I've also had some continuous pleuritic pain in my right upper lung and shoulder since yesterday mid-morning.  It eases with treatments, but doesn't go away.  

My puppies greeted me very enthusiastically, yet gently.  It's amazing how they can sense that I'm off and even in their excitement were super gentle and just been loving on me.  Even though there's physical challenges, I am SO grateful to be HOME!  

It was so cold yesterday that the water that was running down the rocks froze! It was so pretty! 

Roxy was on one side...

...And Blue was on the other. 

Blue not playing my picture game

Kisses! 

Excited Mom's home!

Home Again, Home Again, Jiggity Jig!

 Orders are IN and as soon as my IV finishes at 2, I am FREE to go!!! Yay!!! Super excited to get home to my hubby and puppies! 

I'm overwhelmed by how God has poured out His love to us over the last week and answered SO many prayers on our behalf!  He is a majestic, mighty, awesome, glorious, compassionate, merciful God!  If you don't know Jesus as your Lord and Savior, I plead with you, on behalf of Christ, be reconciled to God! "For He made Him who knew no sin to be sin for us that we might become the righteousness of God in Him." 2 Corinthians 5:22

If you have questions or would like to talk to me, please contact me in anyway!  To God be the glory, great things He hath done! Enjoy some pictures of God's creation and gifts to us He didn't have to give below :) 

In His Mighty Grip,

Rachelle 

A Bit of a Rough Morning--But Going HOME Tomorrow!!!!

I woke up extra nauseous this morning when the nurse came in to draw labs and start my meds at 4.  I went to the bathroom and then started throwing up and dry heaving as soon as I got back in bed.  The nurse, Holliann was super sweet--she held my hair and then rushed to the computer to see what I had on order and got me Zofran right away because I couldn't stop dry heaving (which I despise lol).  Turns out the labs revealed my Magnesium is low and I looked up the symptoms and nausea and vomitting were some of the top symptoms along with things that are some side effects of the IV colistin so that had me curious to see if it leeched magnesium.  I looked up what antibiotics leech magnesium and it turns out Azithramyacin does, which I am on 500mg three times a week continuously.  This could explain why my nausea has been worse lately, so I'm going to start supplementing at home.  

I got the zofran and started to feel better and drank some of my protein shake and then threw up again even with the zofran.  Back to just sipping on my fizzy and bubbly and I'm better at the moment.  

They never came yesterday to do PFT's (lung function tests) so I talked to the nurse first thing this morning to make sure they come today.  I'm not worried about those at all cause they have been stable.  The doctors typically come around between 9-10:30 so as long as my liver and kidneys have continued to behave we should be able to work towards going home tomorrow.  Dr. Solomon came by yesterday afternoon and agreed with the plan and said I'd probably go home on both IV meds for about 5 more days to make sure we really kick this infection for good for awhile.

So I wrote the above this morning and my blog wasn't working so I couldn't finish it.  They came to do PFT's and my lung function actually DECREASED by 7%....I couldn't believe it.  They said plus/minus 5% is considered "no change" but it doesn't make any sense to me how when I'm feeling really cruddy it actually increased 2% to 62, but now I'm feeling better and it decreased to 55.  The good news is that I'm still on track to go HOME tomorrow on both meds as my liver and kidneys are behaving! Praise the Lord!!! I'm definitely ready to be home.  And Jord is beyond ready for me to be home lol.  So thankful for our wonderful marriage!! 

It's been a zoo in here this morning, but also fun and going by fast.  I have an RT that is a student, nursing students doing patient care tech's job today, and the doctor asked if she could come back with medical students at two.  I love to help people learn, especially about rare diseases, so I pretty much always say yes to these things unless I'm feeling really cruddy and just don't have the energy for it.  

All that to say, I'm gonna sign off for now and try and get some rest since I've been up and going since 4 this morning.  

Turning the Corner & Hope to go HOME Friday!

The doctors just came in and I'm going to get PFT's (Pulmonary Function Test--see where my lung function is at) today and then they will check labs tonight or early tomorrow morning and as long as my kidneys and liver continue to behave, I can go home Friday on meds.  Happy Dance!!! 

I chose not to take the meclizine as I looked up the side effects and they were pretty much the same as the scopalomine patch so I decided to go without and just deal with the vertigo when it came back.  Praise the Lord, it has NOT returned!!!! Which is truly a miracle and a testament to the many prayers going up on my behalf!  I'm a little lightheaded after the IV colistin but that is to be expected.  My mucus is not as thick and sticky and easier to get up and it's not green anymore, so more good news!

Jord has not passed the kidney stone yet, but the pain meds they gave him to take every 6 hours are working and he is getting sleep, which is a huge praise.  

So thankful for everyone checking in on us and praying for us!  It has been a crazy and hard week, but we have both been so filled with God's peace that transcends all understanding and our church has gone above and beyond in serving us, loving us, loving on Mom and Dad T, and just offering help for anything we need.  This is truly a tremendous gift from the Lord! 

I'm gonna sign off and go for a walk since I haven't gotten to that yet cause the Respiratory Therapist was late this morning and then I didn't want to miss the doctors so I've got about an hour before I get hooked back up the IV for 3 hours.  

Have a great Wednesday! 

Rachelle 

 

Choosing Between Side Effects

 Good morning all,

  At the moment I'm itchy, unsteady on my feet, have a dry mouth, my skin on my face is super dry and hurts when I put lotion on it and when I try to read stuff on my phone my vision is a bit blurry--some of these are from the colistin and some from the scopalomine patch that is helping my dizziness and nausea.  I will be talking to the doc first thing this morning and see what they say--do I want to deal with the vertigo and feeling like my head is being crushed underwater or do I want the blurred vision, super dry skin, and dty mouth? Thankful God knows what is best and will lead the way.  Oh, they also added a saline bolus (a bag of fluids) before giving me colistin since they got lab results back.  I haven't talked to them about it, but the fact they added the saline means my kidneys were probably not happy.  They re-drew labs at 4:30 this morning too so I'll update everyone once I know more of what's going on.  Dr. Solomon came by yesterday afternoon and asked if I was ok to push through--I said yes.  I am between a rock and a hard place because I have so many reactions but my pseudomonas (the bacteria I'm colonized with) is multi-drug resistant so this combo of high powered antibiotics is necessary to get my lungs better.  He also mentioned that if my lungs clear up while admitted he may be able to send me home without IV antibiotics towards the end of the week.  That would be amazing and what we are praying for, but also trying to hold that ideal loosely, as God's plan may be different from ours.  

Speaking of which, Jord went to the ER yesterday in severe pain and found out he has a 3mm kidney stone.  We were in two different hospitals 90 minutes apart.  It was so hard to not be able to be there with him--he said the pain was an 11 and worse than his heart attack pain.  He's on pain meds every 6 hours and other meds to open up the path and gets to go see a urologist.  In talking this morning he reminded me that I got a small taste of how helpless he feels everyday--he sees me in pain everyday and there is nothing he can physically do to relieve it.  It is SO much easier to be the patient rather than the caregiver!  Caregivers are often the silent casualties of chronic illness.  The divorce rate is 75%.  So so so thankful for the man God made just for me and that we have a wonderful marriage, by the grace of God.  

I've been watching Joni videos and they have been so encouraging and also listening to her book, "A Lifetime of Wisdom" on audible.  She is always such an inspiration and encouragement to my soul.  

There have been times during this visit where I have been tempted to anxiety and started down the path of not wanting to be alone but then God helped me take those thoughts captive and remind myself of truth--He IS with me always, He will never leave me nor forsake me and I am NEVER alone.  As Joni says, "The harder we lean into Jesus the stronger we find Him to be."  

Our church here has been incredible--we have so many offers for help, meals for Jord, prayers, texts with verses and encouragement and Jord had people from work offering to drive him to the ER and anything else he needed. We are SO thankful for this because it hasn't always been like that.  

My brain is getting tired with typing and the bigger screen so I'm gonna sign off for now.   I took the following photos the day after the snowstorm in Huntsville a couple weeks ago.  No two snowflakes are alike and these pictures just remind me of God's intricate design for the world and how big He really is! 

"Therefore we do not lose heart, but though our outer man is decaying, yet our inner man is being renewed day by day.  For momentary, light affliction is producing for us an eternal weight of glory far beyond all comparison, while we look not at the things which are seen, but at the things which are not seen; for the things which are seen are temporal, but the things which are not seen are eternal."

2 Corinthians 4:16-18 

***Talked to the doctors and we are going to remove the scopalomine patch and try meclizine.  She said it's just kinda trial and error and pick your poison.  So we'll see how it goes.  Thanks for praying! 

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)