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| 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!! |
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
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 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!
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| 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! |
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!
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| This PICC line will be my friend awhile longer...no ETE (Estimated Time of Escape) yet, will keep you all posted. Visitors welcome! :) |
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!
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| 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. :) |
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!
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| My 2 year old nephew, Hunter, giving Buddy a hug. :) |
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| 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! |
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| 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! |
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| Loving on "My Old Man" |
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| 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. ;) |
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| During my third Psychosis in 2013...seeing my horse always made me feel better! |
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| Mom holding me on Rammy when I was probably 2. |
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| When Buddy and I were MUCH younger...19 years younger to be exact! |
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| 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 :)
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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!
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| 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. ;) |
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 :)
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 :)
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! :) 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!
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.
Started itching pretty good with the first dose of the last bag. Calling team to see what to do.
And we are off to the races! I asked Jord to take a pic and he took a lot lol Laughter is great medicine!
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.
Patient from ED got room so waiting for another patient to get transferred. Desensitization will be in the morning now.
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 :)
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 :)
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 :)
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!
