Busy Days and a Rough Night

Hey everyone…it’s been a crazy few days since making it home. With people moving us while I was hospitalized, we lost track of a lot of things as I wasn’t there to pack up the last minute stuff so I knew where it was. Our space was absolute chaos lol—I’m super grateful to everyone that helped Jord cause he was overwhelmed with me being gone and coordinating the move and getting our house ready for the buyer. Tuesday night I had my major meltdown on the poor guy—I thought I was gonna crash and meltdown in the hospital and I did have some emotional nights, but it was more the silent tears you can’t stop. This was full on sobbing, can’t talk, can’t stop meltdown. It was the culmination of SO many emotions and new scary hard information to process. Paul, our Pastor, spoke at a conference on suffering a couple years ago in Texas and I’ve listened to it a couple times—he shares about when Julie, his wife, was diagnosed with colon cancer when their kids were very young…and the words that came to mind from that sermon was, “We got the news and we wept together.” It’s the time in this moment to mourn the progression of my PCD, but then as John Piper says, “Grieve the loss but then get back up and live the life God has put before you.” (That is more paraphrase than quote) God gave us emotions for a reason—we need to feel them but we can venture into sinful territory when we let them rule us. So it’s “time to cry” as we process all the things but we can’t stay there—Jesus is interceding for us and as hard as this road is, He will be with us every step of the way………..Wednesday Hannah Payton came here and was here from 10-6:30 helping unpack and organize. Thursday, a new home health nurse came to see me to draw labs (my regular nurse was working in the office preparing for an audit.) and so that took longer and so treatments were late. I walked Blue and worked on her dog reactivity with another friend from church that lives in the neighborhood, Whitney…she was a vet tech and is on Rover (I think) but does a lot of dog sitting so we got to chat and catch up as she has a lot of health issues too. It’s nice to be in the same neighborhood—there are 4 other families from church that live here so it’s super fun. Mom took Hannah Rukhala to clean our old house to get it ready for final walk through (Wednesday and Thursday—she did an amazing job!) and then Jord and I went over and got a couple things out of the backyard and took some pictures and I wrote a note to the buyer and we gave her a small bag of the birdseed that drew all the birds we loved watching everyday. Jord being Jord wanted to test it so we bought 7 different bags of birdseed and put it out at the same time and saw which disappeared the fastest lol so that’s what we got and the birds loved it!…..

Pictures of my favorite things about our house—the yard, sunsets, beautiful flowers and plants, my kitchen, fireplace, and tub…man starting to tear up just writing this—it’s bittersweet—we have moved a lot but our Catalina house (the first 5 years of our marriage, and a few years in the middle) and this house have been my two favorites…both have in common that we added on to the Catalina house and this one we built so it was tailored to us and both also had a decent sized lot and beautiful outdoor features—the Catalina house had the Catalina Mountains that were the background for my entire childhood (my Great Grandparents bought a home near where ours was in the 1960’s there and that’s where our entire huge extended family would gather for Thanksgiving, Christmas, Easter, and an untold number of fish fries over the years) and then this house had our amazing backyard with our own woods and birds and grass and flowers…both homes hold good and hard memories…the first we celebrated our first anniversary there and met my best friend Jenn, watched Da Bears every year on NFL ticket and had so many fun New Year’s parties. We got Crash (my black lab we lost in 2020) and brought Roxy back there after Montana…had my first psychosis and almost died there, numerous surgeries and hospitalizations, got the call my brother was in a motorcycle accident and almost died and one of the very best parts was living across the street from the Hagberg’s…so many wonderful memories made with them! Especially will always remember Larry’s example of prayer—he has been with the Lord for many years now but Nancy has continued the work of translating the Bible into the Mayo people group language in Deep South Mexico…..anyway I have digressed down memory lane lol…….This house we built and got to add the fireplace and tub which I used so many times and we lived in our backyard. We lost Roxy there and we got the Swine flu (which also earned me an ambulance ride and another very close to dying experience) which quickened the progression of my PCD and then Covid this year. We also had fun New Year’s parties with MarioKart tournaments and many sweet times of fellowship with our GCC family and we celebrated our 20th anniversary……it’s been quite the ride these 20 years but God has been oh so faithful and WILL continue to be!……Last minute Sarah and Julie H came over yesterday morning and knocked out a LOT of things so we can officially see the floor in the two main rooms we are living in! My rough night last night was when I got up just after midnight to turn my IV off I ended up throwing up quite a bit…and so much so that I coughed up blood in my mucus….it can be from a couple things—I could have burst some capillaries throwing up so hard/much and/or it can be from the infection. I just need to watch what I cough up today and if it goes away it was just capillaries, but if it doesn’t then I’ll need to let my team know and go from there……the other big news is we have decided to delay my OB surgery until after vacation in May…I’m going to my pre-op appointment on the 1st to talk to the doc in person on if he is comfortable doing surgery on me or not and we’ll go from there as far as if I decide to have my surgery at UAB with a doc there—I’m thinking that’s more the way to go with how compromised my lungs are at this point so I’m there where they know what to do if something were to happen during surgery or after. Please pray for wisdom and perseverance to get through these antibiotics on Wednesday—They are making me more and more nauseous with every dose—my body just hates them at this point. Just finished treatments and my IV so gonna run and enjoy a lazy Saturday with my hubby. 🥰

Made it HOME!!

Just a quick post to say I made it home! I’m exhausted but so thankful to be home! I have some skin blisters from the hospital port covering and my skin is just angry. I did get a real shower tonight before my nurse got here to re-access my port so that was nice! Blue was ecstatic and hasn’t left my side all night. 🥰 The other thing is that this antibiotic doesn’t come in the easy pump squeeze balls so I’ll be toting my IV pole around and starting and stopping the IV—it’s every 8 hours but runs over 3 hours so I’ll start it at 9 at night and then have to get up at midnight to stop the IV and then be back up between 5-6 to start the other one and around the clock we go. 💜 But gonna go finish treatments and try and get some sleep. 🥰 Here’s a couple pics of Blue being excited and doing treatments at home. Night all!

I Get What I Need

Well this morning I got some hard news. My pseudomonas from my culture I gave when admitted came back resistant to Meropenam, the antibiotic they are giving me. However, my culture in clinic on the 11th showed sensitive to Meropenem. The PA talked about how we look at the lungs as a "neighborhood" and one culture can be from one area of the lungs and another can be from a different area depending on cough etc. This is why I get cultures every three months so they have more of a "culture profile" to draw from and don't just treat based on one culture. The "scary" part of the conversation was when he said, "Your resistance profile is not good." This means that my pseudomonas is multi-drug resistant or resistant to a lot of antibiotics. I asked a couple questions...one was I had heard years ago that if I'm resistant we can treat over a longer period of time, but he said that will just make me more resistant. Then I asked if now is the time to consider using IV Colistin, the "last resort" drug we had talked about in clinic. He immediately shook his head and said, "I wouldn't give you IV Colistin except to keep you out of the ICU at this point. You need to really consider and be careful about when to come in the hospital and when to ask for IV antibiotics because we will run out of options to treat and then there's nothing we can do. I know what I'm saying is scary." I told him I appreciated his honesty and that even though it's a scary conversation, we would rather know and be more sparing in our use of meds than not and there's a reason we moved across the country for the clinic. Other places I was treated would use lots of antibiotics to treat any and every infection which has helped get me to this place sooner rather than later. Obviously God is sovereign over that, but this is obviously very difficult news to process. Again, something that is expected with the progression of PCD, but it's hard to hear when you actually get there. When I talked to Jord we talked a little bit and then he responded with, "Well at least you won't have to worry about side effects then." LOL Thankful for my man and his humor...not only is it helpful to laugh in the midst of difficulty, but it's really good airway clearance for me too. ;) ....................We also talked about going home--if my PFT's show improvement there is still a possibility of going home today, but he said it takes a lot to coordinate all the logistics so it will most likely be tomorrow. I'm praying, and would love for y'all to pray, that things will come together today so I can go home with Mom and Dad this afternoon/evening, but if not, Hannah P is set to come get me tomorrow, so either way, I know God's plan and timing will be perfect....although sooner is better because the other night I was talking to Jord and he was saying, "I open these boxes and I have no idea where any of this stuff goes, so I can just throw it away." and I was like, "NO, no...back away, do not touch, I will be home soon to help take care of it!!" LOL So thankful for the design of marriage and how we complete each other and being married for so long, we each have the roles and what we do to help each other and how we work so well together...I definitely am the administrative one in the relationship--do the bills, paperwork, pack, unpack, organize the house etc. He can and has done all those things when I can't, but it works best when I can take care of those things and he works and provides for us and takes care of researching things, taking care of the cars, yard, anything mechanical or electronic....as an engineering technician he is a perfectionist with a lot of things and I'm the "ah, it's close enough" girl which can drive him crazy, but we just work so well together--God truly made us for each other.

I texted out some of this update with my verse texts this morning and got questions about what do you treat with now and what does that mean for surgery April 7th? For now, since I'm responding to the antibiotics symptomatically and feeling better, we are going to finish out the 14 day course of them, then give my body a break from meds before surgery. I'll have the surgery and then depending on how my lungs do after surgery, go from there. I'm SO thankful for how thorough and careful they are here and that they will have those hard conversations to let you know where you are at, why they are making the choices they are making, and educating me so we can pray and make better choices overall. Jord and I talked and for us, this means taking other things we CAN do a lot more seriously at this point. I will be starting a Paleo diet, exercising everyday (as the goal, knowing it won't be perfect), and looking into and researching other ways I can help my body with nutrition and supplements and other modalities that can be beneficial. The balance is being a wise steward--our Pastor is preaching through Proverbs right now and we just got done talking about finances and that has been an issue in the past where I was so determined to do supplements etc that I spent way more than we could afford on things that didn't end up making that big of a difference. That's why I'm so excited about being able to see Terry Wingo at Madison drugs because he's willing to work within our budget and is so kind, compassionate, and helpful. He and Dr. Solomon both are--it's amazing to finally have them both on my team....God always provides exactly what you need when you need it. And as "Papa" Butch said to me when Grandma was in hospice, "God is never a second too late or a second too early." Dr. Solomon came in just as I typed his name lol and he said as long as my PFT's show some improvement I can go home today! So pray they have improved! He also had me call my surgery cordinator at Dr. Macintosh's office and talked to her and figured out what they need for surgery clearance. He said after we got off the phone that sometimes when the OB's see their note, they balk and refuse surgery. He said he cannot say I am "low risk" for surgery because of my lungs I'm at high risk but he said if he isn't comforatable doing it, they can get me in with an OB here to do the surgery because they are used to doing surgeries on more complex patients and work with the pulmonary team here, so I will get it done, it's just all in God's hands right now! Mom and Dad are on their way down with a Good Company salad for me so I'll be eating a super yummy lunch and then Lord willing, hopefully packing up and going home with them tonight!........I have some more stories for you too about God's transforming grace from my nurse Candace (who said I could share her story) who got saved 6 years ago out of an opioid addiction and was at a nearby jail earlier this week ministering to women in jail and she said 17 people got saved. She was my nurse yesterday and today and is the sweetest sister in Christ. Justin, the guy that has been cleaning my room all week, is off today, so I met Q who is also a believer but has a Mom in the hospital in Mississippi and an Aunt on life support in Mobile and is also in school and has a cleaning business on top of her job here. Please be praying for her Mom and Aunt and for Q to be able to know what to do when, as those are two very difficult situations. I'm gonna sign off for now and get some exercise to get some junk out of my lungs so when they come for PFT's they should be better!! :) This is me and Candace :)

And then yesterday I got to Facetime Kayla for over an hour and got screenshots of my sweet niece and nephews :) Enjoy!

Might be Going HOME Tomorrow or Wednesday!!!

I saw Dr Solomon this morning and there are no ENT surgeons here this week so God worked that out! I’ll have repeat PFT’s tomorrow to see if my lung function has improved and if that’s good, I could potentially go home tomorrow afternoon or Wednesday morning. SO thankful!!!! I will complete the 14 day course of IV antibiotics and then give my body a break from the IV’s until surgery on April 7th and then restart them at home after surgery if I need them……we also talked about basketball (the AZ wildcats beat Oregon last night which is super sweet because today is the 7th anniversary of Grandma’s heaven going.) and football. He even apologized for not being able to pop in on me last week because he wasn’t feeling good and needed a day off to rest. He truly is one in a million when it comes to doctors!

I represented AZ last night wearing a shirt Netta bought for Grandma and I packed knowing it was going to be the 7th anniversary of her passing not even realizing there would be a game to watch. They were down by 10 when I turned the game on and then at one point were up by 11 and then they let Oregon come back to within 1 in the last couple of minutes, living up to their name, “Cardiac Cats” lol. My stomach was in knots and I was praying for them and definitely let out some excited yells last night lol.

It brought back so many fun memories going to games with Grandma and Aunt Karen (both are gone now) and one of the last things I did with Grandma was watching them in the tournament right before I was hospitalized and she passed. Today is a day of mixed emotions for sure! Sadness and grief as I miss her so very much but eternal gratefulness that she is with Jesus and there is a Day coming when I will see her again! And of course excitement at the unexpected news I may get to go home so much earlier than I anticipated! God is so very good and His ways are so much higher than ours! (Isaiah 55). To HIM be the glory, great things He hath done!!!

God's Timing is Always Perfect

Today was another good day--I got to see my honey! He got here about 9 and helped me shower--showers always feel so good! And I got to be unhooked from everything for a bit which was super nice because my tele-box hates me lol--it's constantly beeping about something and 90% of the time it's not right lol. The other day when I went for my morning walk I had to come all the way back up to the unit twice because it was alarming SUPER loud because it thought my heart rate was 142 when it was only 90....they put a new battery in it and it did it again, so they just called the people that monitor the alarms and I think they just turned the alarms off for a bit so I could actually get my walk in. When you move your finger that has the pulse ox monitor on it (it monitors your oxygen level) it thinks my oxygen is plummeting anywhere from mid 70's-80's so once it gets below 85 it starts alarming super loud and that is not fun for my head. Since the Trigeminal Neuralgia (TN) diagnosis, I've been dealing with more random head pain and then you combine that with my sinuses being plugged up completely (my CT scan showed my ethmoid and sphenoid cavities are opaque which means they are completely packed with infection and it's time to get them cleaned out)....I'll find out tomorrow whether or not we'll be doing that this Wednesday while I'm inpatient, or if they want to wait until after my other surgery and do it outpatient another time...regardless I'm racking up the surgeries that need to happen, it's just a matter of timing. One of the cavities is right behind my eye and the other is near my ear...here's a picture I found online that shows the different cavities:

Jord and I livestreamed church and both of us kind of closed our eyes and rested while we listened...he's exhausted and hurting from moving yesterday and I'm exhausted from not getting a lot of sleep last night after my super fun-filled day yesterday. Definitely a turtle day today, but we got Subway and chatted. He got to meet Justin (the guy that cleans my room) and talk basketball and video games...it's funny cause one day he came in wearing Nike shoes that said "Air" on them and I said, "Are those Air Jordan's?" and He said, "No! Scottie Pippen!" Whoops lol! Jord started talking about how fun the Chicago Bulls were to watch and he was like, "I didn't get to watch them because I was born in 1996"...yep we are that old now lol. Age doesn't bother me cause I'm just that much closer to heaven, but it's just weird being in my 40's now and we still hang out with the "20 somethings" at church a lot and it's just weird to think they are 20 years younger than us and theoretically we could have a 19 year old if we had been able to have kids...time is a crazy thing!.......We got a few pictures and then I walked him downstairs to say goodbye because he needs to get back to Blue--she was already stressed with us packing up the house and me being down here and then after moving yesterday and being in a new house she is struggling. We took one last picture in the hallway and then I gave him a goodbye kiss and was starting to get misty-eyed when an older gentleman who was sitting on a bench in the hallway stopped me and asked if I had had heart surgery because he recognized the tele-box. Turns out his wife, Debra (guessing on spelling!) is having heart surgery tomorrow and he had been a match for her 26 years ago and was able to give her one of his kidneys. I asked what his name was, so I could be praying for both of them, and I pointed back toward Jord, and got choked up and started crying as I said, "I know it's so much harder on you guys to watch us suffer." He managed to hold it together, but would you all be praying for Richard and Debra tomorrow? Also, pray that I can find out where the surgery might happen because I want to write a note to them and see if I can find him in the waiting room tomorrow to give it to him or at the very least, see if one of my nurses can find out what floor she's on and send a card that way. Moments like these are God ordained and His perfect timing...if we hadn't walked down at that exact moment and if his leg didn't have issues to where he needed to stop and take a break before walking out to the parking garage, we wouldn't have met. Jord called on his drive home and I told him about him and he said, "Yeah, he caught up to me in the elevator and said, 'I just talked to your wife in the hallway'." Jord wished he would have known cause he didn't say anything after that but there's just a silent bond there with a complete stranger as they both know what it's like to watch their beloved suffer, and it's one of the hardest things in this world. I'm crying now writing this....I'm so thankful for Jord and the beautiful gift of our marriage that God has blessed us with...the first time I almost died we had just celebrated our 6th anniversary (my steroid induced psychosis in December of 2010) and He saw fit to spare my life then, plus several others since then, and that's why our 20th anniversary celebration this past December in Nashville was so very special to us. As we walked down the hallway, hand in hand, with me pushing an IV pole, Jord joked, "Watch, we'll be 90 walking down these halls holding hands." to which I replied, "Except then you'll probably be pushing me in a wheelchair." and he said, "Well, by then everything will be electric so we can just zip around." He continues to make me smile and laugh even in the hard moments of saying goodbye.......We are hopeful that depending on what my pseudomonas is sensitive to that I might get to go home Thursday or Friday if I don't have my surgery Wednesday. If I do have my surgery Wednesday, then Friday could still be a potential, just depending on how I do. If the culture results show that my pseudo isn't sensitive to the antibiotic I'm currently on, then we'll have to add the "last resort" med that will make me dizzy, among other things. I have gone home on that one in the past, so depending if/when I have to start it, they will probably want to watch me for a few days and make sure I'm not having any serious unexpected reactions and then I can finish out at home, through my surgery on April 7th. My lungs hate anesthesia, so my guess is I'll be on IV through about a week after surgery. My RT should be here soon to do breathing treatments then I'm going to try and get a good nap to make up for the late night last night. Thanks for praying for Richard and Debra and for Jord and I. I don't know how people without Christ get through these moments...I'm so thankful that I'm never alone and neither is Jord and that just as God keeps me He is keeping Jord and One Day sin and all it's consequences will be done away with for all eternity! Come quickly Lord Jesus!

Love One Another

Today was a day full of the body of Christ living out this command from Jesus to love one another. Twenty people showed up to help Jord move this morning and while people were helping them move, a sweet family from church that I haven't gotten to know well came and visited me for several hours--Tonino, Kat, and their sweet little guy, Teddy. We had sweet fellowship and also discovered a small world connection--Tonino and his family lived in Salinas, CA which is where Papa (my Grandpa) had a really good friend who owned a farm and Papa did some of his agricultural research and development. When I was a young teenager, Papa and Grandma took me on a trip to see them and help with some of those projects....it's such a small world! I also got lots of baby loves from Teddy--he had never met me, but he warmed right up and sat in bed with me and ate chips and snuggled and we watched "Jesus Loves Me" and "Hippopotamus" which are songs I sang with all my kiddos back home and of course, my fingers got "itchy" and we had tickle time and got a video of that sweet baby laugh! SO much fun!

They left and 20 minutes later, my friend Cass, who I met volunteering at Victory Alliance Ranch in Huntsville two years ago, came to visit. She came in and I laughed and said, "I don't recognize you all cleaned up with makeup on cause I'm used to seeing you all sweaty and covered with horse stuff at the ranch!" She brought me a perfect care package--all in a huge adorable doggy bag from Marshall's. A soft blanket, a robe, a journal, some pens, and of course some yummy snacks. She had a childhood cancer and is a living miracle--she lost her left lung and half of her heart--she really shouldn't be alive, but the doctor that saved her "just happened" to be in Birmingham and a leading researcher in the field. One of her hospitalizations was 11 months long so she gets being in the hospital and what helps make the days better. We started talking and oh my word! Her sister worked for my best friend's mother in law in Tucson AND her brother-in-law works for a police department in my old stomping grounds and probably knows my brother-in-law and my brother didn't recognize the name but they have probably run scenes together. (For those that don't know, my brother is an EMT/Firefighter and my brother-in-law is a paramedic.) We also have mutual friends in Tucson (according to facebook lol) from totally different areas too--one was Sovereign Grace (our old church) and the other was a girl that is my sister's age and was in our 4-H club....just CRAZY! We talked for almost 4 hours before she finally headed out and found out besides all that stuff we have a lot more in common than health stuff and our passion for horses.........Last night was so rough and today was a day filled with sweet fellowship and just the encouragement my heart needed. To our GCC family--I cannot say enough how grateful we are for you--the love and support you have poured out for us means more than you'll ever know! I'm super excited to get to see my honey tomorrow. I'm joyfully exhausted tonight so gonna sign off for now. Here's a few pics of Cass and I and what she brought me:

"Beloved, let us love one another, for love is from God; and everyone who loves has been born of God and knows God. The one who does not love does not know God, because God is love. By this the love of God was manifested in us, that God has sent His only begotten Son into the world so that we might live through Him. In this is love, not that we have loved God, but that He loved us and sent His Son to be the propitiation for our sins. Beloved, if God so loved us, we also ought to love one another." ~1 John 4:7-11~

God’s Mercies are New Every Morning

Just wanted to write a quick update since last night—Thank you to all who checked in on me and let me know they were praying for me or sent me funny pickle memes. 😉🥰 I did get my sandwich and it was yummy and this morning has already started out great—my nurse is a believer and has only been a nurse for 4 months but loves it—I can already tell we are gonna get along great! 🥰 God’s mercies truly are new every morning—Great is His faithfulness! Addy took this pic of Blue yesterday when she let her out for us—she is laser focused on her ball but it’s a great picture of her and makes me smile!