Hospital Update: Farmers Market and Gift Shop, Oh My!

     I'm definitely starting to feel better, praise the Lord!  It only took 12 days of two heavy duty IV antibiotics every 8 hours...my body seems to be taking longer and longer to respond to treatment, but I'm thankful I still respond!  Several of my PCD friends are going through some really difficult times--one of them is on the transplant list and has been in ICU for 23 days with a collapsed lung and a chest tube due to a leak in her lung which they had to surgically repair yesterday.  Another friend is battling a really serious Non-Tuberculosis Mycobacterium and Pseudomonas infections--she's on 6 different IV antibiotics around the clock and if that doesn't work, she has a very low % chance qualifying for a transplant because both of the bacteria she is fighting are super antibiotic resistant.  My first friend is my age and my second friend is about 10 years older than me.  Some days the reality of PCD hits hard as I watch my friends that I have come to know and love fiercely through our facebook group literally fight for each breath.  Please be praying for these dear friends as they are literally fighting for their lives.  When I get discouraged about how I'm doing, I just think of these and other fellow PCD warriors who have gone before me and walked through much darker valleys and come through the other side and they inspire me to keep on keeping on.

     Today was a fun day--I walked downstairs this morning and the weather is beautiful today! The high is only in the high 60's, but it was sunny with a cool breeze and there is a Farmer's Market every Friday outside the Medical school that is connected to the hospital.  I discovered Vegan magic and pecan bars--SO yummy!  Rafael, who was selling them, had a Bears jersey on, so that's why I went to his booth first and we started talking about the Bears.  He just moved here to help his cousin with this baking business last year from Chicago...so of course I had to trek back up to my room and get some cash and get some bars because I could actually eat them and I'm actually hungry again, which is always a sign that I'm starting to get better.  :)  Then Grandma got here and I had to show her the booths and there were some organic teas and the lady was super sweet and not only gave me samples, but after I shared my blog card with her, she gave me a box of Earl Grey tea, which is one of my favorites!  Then we discovered seafood rice at another booth and split that for lunch--oh so good!

     Before Grandma got there I went to the gift shop to "look around"...they have so much cute stuff and it's always changing.  There are two gift shops--one on the children's wing and another at the main entrance.  The main entrance one has a million butterfly things and the kid one just has so much fun adorable stuff.  They have a little horse that says to press his ear and I just thought it'd make noise like most of them do but it started moving and thankfully I caught it off the shelf--it gallops! My nephew, Hunter, would love it! (And honestly--so do I LOL).  Gift shops at hospitals are so dangerous but they have fun stuff to take your mind off the fact that you are at the hospital.

     My Father-in-law flew into town today from Alabama, got the Uhaul truck and trailer and he and my sister-in-law, Kerstin, drive out early tomorrow morning.  It's crazy how fast time flies...this move for her has been months in the planning so it's gone slow and fast, and I will miss her but I'm excited to see what the next chapter holds for her.  Even though he had to be exhausted, Dad still made time to get us Pei-wei and visit for a couple of hours and it was fun to see him and catch up.  I read the updates on Matt Dodd to him and we both cried...Matt and Cameron's testimony of faith during an incredibly dark time is so inspiring!  For those of you that are newer to the blog, Matt and Cameron are missionary friends from a church we used to attend in Phoenix, Grace Bible Church.  I did a blog post sharing his story a little while ago, but long story short, he was diagnosed with stage IV lung cancer in January and had a stroke and almost died.  He is now walking with a walker and was recently released from rehab and is home with his family--I cried tears of joy knowing the sweetness of reunion as Cameron shared that she would "Lord willing, get to sleep next to her husband and her kids could have breakfast with their Dad."  Things that we often take for granted but aren't promised--Matt will be going to Grace on Sunday in Phoenix for the first time since the stroke and will be speaking--if you live in the Phoenix area, I say go!  You can also livestream their services from their website, which I am planning on doing, Lord willing.  I'm so blessed to call them friends and can't wait to hear what Matt has to say on Sunday!

     Momma stayed the night last night and endured a night of "Ivy", my IV machine, not cooperating and blaring an alarm, "air-in-line" a ridiculous amount of times so she had to get replaced, so now I have "Ivy 2" lol.  Mom's been the only one to brave spending the night so far--life circumstances for so many of my friends have changed over the last few years as precious little ones have graced their lives and Mom has been gracious enough to stay and be with me when they desensitized me in the ICU and she's going to stay for my surgery on Monday so that Jordan doesn't have to use up vacation days to be at the hospital but can actually save them for some actual vacation time this summer--what a concept!

     I also got to facetime my sister which is always fun--I'm so grateful for technology to let me "be" with her and others when we are apart.  I could still be a big sister tonight when she was at the end of a rough day with little ones and her husband, Kyle, was at work as a firefighter on a 24 hour shift.  He's also in paramedic school, so sometimes she goes 36 hours without seeing him with a 3 and 1 year old.  She loves being a Momma, but it's also hard, as all Moms know.

     It's also my Mom-in-laws birthday today so I called and talked to her this morning.  Her sister, Aunt Bindy, flew to AL to keep her company since Dad flew out here to drive Kerstin home on Mom's birthday.  Now that I'm writing all that happened--in between breathing treatments, IV antibiotics, vitals, and all the other stuff, no wonder I'm tired tonight!  It's truly been a fun day--it's funny that I can say that even though I'm away from my hubby and puppies, and my "normal" life, but right now this is right where God has me.  I've been able to continue to make new friends and catch up with old ones and make some even deeper connections--it's amazing what God does when you are squarely in His will and how He sustains you and makes the time go by quickly.  Lord willing, surgery will go well on Monday and I'll get to go home the following Monday, the 10th.

     Thanks for the continued prayers, love, and support! God is faithful and continues to sustain Jord and I--he stopped by Wednesday after work and I was fine until he had to say goodbye...that's absolutely the hardest part of these stays.  Lord willing, I am more than half way through this stay and we can start counting down the days!  As always, here are some pictures to enjoy!

In the Love of the Lamb,
Rachelle

Dad T. playing my picture game :) 

Eating our Pei-wei

Me and Grandma

Yummy local baking company!

It was a "food pictures" kind of day...guess that's what happens when I start eating again!

Fun temptations at the gift shop!

Waddles peeking out from the covers after snuggling with me all night :) 

     

Hospital Update 3.28.17

     To say it's been an eventful and rough 5 days since I last posted would be an understatement.  I've tolerated the IV antibiotics well over all.  I was furiously working on trying to finish a surprise DVD slideshow for my Uncle Mike's birthday, but didn't quite get it done, so made some adjustments.  Then my port got sluggish and there was a fiasco and it got deaccessed without being flushed with heparin and then two nurses tried getting it, but couldn't get blood return and the second nurse that tried was super painful when she tried to flush it (stinging and hurt so bad...wasn't good).  They were thinking it was clotted so the doctor ordered a "clot buster" and on Monday one of my favorite nurses tried and got it on the first stick WITH blood return which meant it wasn't clotted.  They pulled my other IV they had had to start since my port wasn't working for Friday/Saturday.  I ended up in a lot of pain Saturday night...so much so that I took one dose of morphine for sinus and lung pain, then woke up about 12:30 with tons of abdominal pain--it was like a 10 on the pain scale for me which is pretty bad, so the doctored ordered another one time higher dose of morphine and when I woke up briefly a few hours later I was super dizzy and light headed.  Well about 5AM (just as my nurse went home and the charge nurse took over for her) I started throwing up and couldn't stop.  It was absolutely miserable.  Due to so many different averse reactions I can't take any anti-nausea meds so they ended up giving me Ativan or Lorazapam.  It's a pretty strong drug that's typically used for anxiety, but it makes you super sleepy so it helped me sleep through the nausea so I stopped throwing up.  The sad part was I was continuing to throw up Sunday, the only day Jord had to come down all day, so they had to give me more Ativan, so I basically slept the entire time Jord was here.  I needed it, but it was a bummer not to be able to talk or really remember the visit because Ativan is like a short acting valium, so I don't really remember much from Sunday.

     And it knocked me out so good, that when my brother  got here to see me he couldn't get me to wake up so Justin finally has a reverse picture cause he's usually the one that falls asleep or won't wake up.

     I have absolutely no recollection of him being here.  Netta, Mike Pattie, Travis, and Cassie also came to visit and our surprise worked--Uncle Mike was completely blown away by the video.  I absolutely LOVE making them--it's so fun to encourage people and look back over the memories.  Netta videoed people on her phone asking them what they thought of the video and I remember bits and pieces but I told her today that I need to watch them again so I can actually remember them now that I'm not on Ativan LOL.

     Yesterday was a much better day.  No throwing up, no Ativan, so I actually remember the day.  Sadly, although Gina got my port in one stick, there's a leak or something going on with that because it was stinging and swollen to the point where I was in tears in so much pain.  So they had to stop using it again and start another IV in my other arm so I'm now on my third IV and they are leaving my port accessed because it's not infected but something is definitely not right with it.  It's super frustrating because the whole reason I got a port last May after I got better was to make treatment easier.  Thankfully, my regular IV's have been so good that they have been able to draw labs from them instead of having to poke me extra times.  Both arms are sore and my port area is still swollen, although not as much as some of the fluid has absorbed into the skin.  Thankfully it was mainly saline and not a medication running through the port at the time.  The plan now is to get an ultrasound done on the port and depending on what that shows, I may end up in Interventional Radiology (IR) where they can inject dye to see if there is a leak.  If there is a leak, then the port will have to be replaced which means minor surgery.  

     None of these things are what I had planned, but none of them surprised God.  Not one of these changes to MY plans came to me until it came through the hands of Jesus--while it has been a more challenging 5 days, it has also been 5 days that has me desperately needing Jesus, and as Joni Eareckson Tada says, that's a good place to be.  I've done these hospitalizations so many times now, that there is a part of me that is prideful and goes, "Ok, I've got this now." Nope. I don't got this and I need Jesus every step of the way and these challenges and setbacks, while frustrating, are also bringing me to the end of myself and making me depend heavily upon Him and His strength because there is no way I could make it on my own.  

     Due to all these things, the time seems to be flying and sinus surgery is T-minus 6 days now.  I'm looking forward to getting that behind me so that I can start healing and work towards getting home--although we will be moving out of our rental and into Mom and Dad's house as soon as I get out of the hospital...and one exciting thing is that we put an offer in on a house and they accepted, so pending inspection, we will once again be homeowners!  I'm really excited about that prospect and praying that the inspection goes smoothly--the inspection is Monday at 3:30 if you would like to join us in praying! 

     Here are some pictures of my hospital adventures over the last 5 days since I last updated you.  Hope you enjoy them! Oh yeah, I got a mini-fridge too, on loan from some family friends for which I am extremely grateful because then I don't have to worry about my Kombucha or Almond milk or other things like that getting thrown out after a week when they clean out the fridge.  Yay for the "little" (but really big) things! :) 

Netta and Pattie getting the video slideshow for Uncle Mike

Orchids from Aunt Netta!

Flowers in the garden downstairs

They have Picacho Peak on the wall in the kids area...Justin and I are going to the peak of the Peak when I get strong enough!

Got a pretty sunset the other night

Aunt Pam came to visit!

Waddles and me at night

Uncle Mike and me :) 

Jord playing games while I slept

Meeting Kerri, a Rare Disease Buddy :) 

Rough day, but still smiling!

My third IV

Potassium pills because I couldn't have it in normal IV because it can burn your veins and since my port wasn't working, I had to take all of these

Heat compress to help fluid absorb around port

Face timing through messenger with my sister and Gunner! Love my family!

Oh so true...miss those arms, but God grants us the grace to sustain us!

"Accidentally" took this picture--it's all about perspective and focus!!

Kerstin hiding behind Waddles

Saying goodbye to Kerstin--she leaves for Alabama early Sat morning!

Soaking up the sunshine in my LuLa Roe butterfly leggings!

Sunshine!

Pretty sure Kerstin brought me enough crystallized ginger for when I'm nauseous!

Hospital Update 3.23.16

     It's been a crazy 3 days!  Dr. Ojo is amazing....I got to the ICU on Monday afternoon and literally it was one thing right after another--saw both hospitalists, allergy intern, ENT, allergist, and about 10 other people getting everything ready to start the desensitization.  We started and I did pretty good until they hung the last bag--my tongue went numb, along with my throat and lips and my throat felt really weird and like it was hard to breathe.  I got anxious even though I tried not to, but my Mom coached me on breathing to calm down and docs came by and they slowed stuff down and I was able to complete the process without anymore hiccups.  They added the second IV antibiotic, Colistin, and watched me while I took that to make sure I did ok and then got me over to the floor, my home away from home, 3NE.  

     I prayed for a good room with a view, like I always do, and boy did God answer!  I got the best room on the unit! It's got an incredible view of the mountains, is a little bit bigger, is at the back of the unit between two double doors and then my door, so it's as quiet as it can possibly be for a hospital room.  I was so excited when I saw which one I was getting!  And Lord willing, I should be able to keep it for after surgery since I'll just be going down to OR and coming back after surgery.  The antibiotics are every 8 hours instead of every 12 hours--meaning I get something every 4 hours.  These are heavy duty antibiotics--Dr. Ojo doesn't mess around!  I'm so thankful for her--we are going to kick this infection to the curb!  

     So far it's been a whirlwind of activity--there is so much going on at home too--apparently I like to be hospitalized when we have to move.  Our lease is up April 15th so we are moving in with my parents for a few months give or take a few until we can figure out if/when we can buy a house.  As with any move, there is so many ups and downs with the purchase process--I'm trying to do as much of the administrative stuff as I can from the hospital and Jord is working a bunch of OT to help us get some debt paid off so we are in a better position...all while preparing to pack and clean and be out of the house 5 days after I'm supposed to get out of the hospital.  It's been an emotional few days to say the least!

     It's been fun catching up with the nurses and techs I met last year and meeting new ones.  The staff here is amazing--they take such good care of me and I'm very grateful!  With everything going on at home and how exhausted and emotional and just not feeling good it's a blessing to not have to fight to get the care I need--Dr. Ojo had everything super organized and orders in and I don't have to worry about a thing.  It's an incredible blessing I don't take lightly! 

     I didn't get the best sleep last night...it took me awhile to fall asleep and then my machine decided to be retarded last night and blare "air-in-line" multiple times and then vitals and labs at 6 and cramps from my period (yep, lets just do everything at once body!), so I went to bed around 11 and had interrupted sleep and then was up at 6.  I'm thinking there's gonna be a nap in my future today! And a shower! 

     Here are some pictures to enjoy from my stay so far :) Thanks for all your prayers, love, and support of Jordan and I! 

My amazing view!

I got to sit outside! :) 

Purple flowers! 

Waddles and me ready for bed!