Sunday, 5/31/26

Hello!  Hope this finds you all well?!  I've felt better but maybe it's just cause I'm missing all of you and home?!  I want to go home in the world's worst way but know it will just take time!  The drs said that I could have some of these days, but dang - no fun!  I'm missing my brother playing baseball in Salina and Layla's dance recital, ugh!  Gemma's getting back from church camp today but she'll be busy with summer activities in Hays so I don't know when I'll get to see her again or Warren for that matter?!

On a positive note, Mom and Layla are doing the ol' switcharoo with dad later today after her recital!  I'm super excited to see my girls minus Gemma!  It's better than nothing and will be a nice change!  I'll spend the week with them and then we'll switch again next weekend after Warren plays baseball in Newton!  I don't have much else to report other than I have another scheduled check up on Thursday, 6/4 which we hope brings more good news and continued stability!

On one of dad and I's short excursions, we checked out the pop tabs operation at the Ronald McDonald Houses!  Talk about a lot of pop tabs - 4 tons collected in 4 months!  Please, please, please save those tabs as they provide lots of funding and support for this wonderful operation!  

All for now as I'm super excited to see some of my girls tonight, gotta go get ready!  I love you all! 

FRIDAY!!!

YAY!  We made it!  Today started out a little rocky to say the least with several phone calls to insurance and the typical runaround - I have nothing nice to say, so silence is golden!  On the flip side of that coin, you all worked wonders again with your thoughts and prayers - THANK YOU!  I got a call today from the transplant team and they said that my biopsies all looked perfect - they scored a 0 which means that there are no signs of rejection, whatsoever!  We're still waiting on the antibody results but that could be early next week before we hear on that?  

I received great news today and I am ever so grateful for the Good Lord above!  Dad and I were getting a little cabin fever so we decided to go check out Billie's Grocery that has a lot of gluten free and dairy free alternatives!  I can't remember if I've blogged to you how I was recently diagnosed with Celiac Disease or not but it's been a bit of an adjustment for us?!  I've always been a big foodie so with the transplant on top of the recent diagnosis, it's been a little trying to say the least!  It was nice to get out and go explore / try something new!  Billie's kombucha isn't near as good as the fam's back home though - just FYI!  Gonna kick back and relax to start the weekend off right. Lets Go, Royals!  Goodnight, I love you, God Bless!  

                                              Cheers!  
     

Thursday - 5/28/26

Happy Thursday - we can do it, only one more day to the weekend!  Today was pretty much a hospital day but a good hospital day with a lab draw first thing this morning and then check in for my heart catheterization apt at noon which turned in to more like noon mountain time!  Oh well, it goes with the territory!  The actual procedure only took about an hour and they were estimating an hour and a half to two hours so I ain't complaining!  They also went through my neck instead of my groin so I only had to lay still for 2 hours post procedure and could be elevated somewhat!  Time it was all said and done, we got our walking papers at about 4 bells!  When they go my groin, I have to lay flat and be still for more like 3-4 hours afterwards so this was a walk in the park!  

The docs said that all my vessels look good and patent!  My pressures are still a little elevated on the left side of my heart meaning that it still needs to relax a little but they're not concerned!  They increased my lasix a little to help with this but said it's totally normal when they do a transplant on a fontan (single ventricle) patient such as myself?!  Time will tell as I'll have another heart cath in two weeks (4 weeks post transplant) to re-eval?!  They biopsied the new ticker to put my new cells under a scope and check for signs of early rejection - they're to call tomorrow and give us the news?!  That being said, maybe throw a couple extra prayers my way if you don't mind cause I'm ready to spread my wings!  I know you will and know that I'll be praying for you cause we all got our crosses to bear!  

I'm feeling better each day for the most part but am excited for my steroids to start tapering off tomorrow!  I got the shakes, my insides itch, and my appetite is all over the place which they say is completely "normal"?!  Considering where I was and where I'm going, I got no complaints - thanks to you all pulling for me!  I miss you all more than you'll ever now!  All for tonight, blog atcha later!  Night, Night - I love you!  

    Me & Bernardo - my Squishmallow they were giving kids today!
      

5/27/26 - Hump Day

Hello blog readers!  Two weeks ago tonight, my family and I got the call that they had found a match for my heart transplant!  That was the ticket to ride this emotional roller coaster that we've been on ever since!  Everything is working out great and I'm stoked for the future but I can't help to think that I'm now two different people kinda rolled into one - God Bless this donor family wherever you may be! 

Early today was filled with tying up loose ends business wise and making plans for the next few days!  It seems as if we don't look down the road 1-2 weeks at a time, this boat ain't gonna float?!  My meds have to be slightly altered for my 2 week heart cath tomorrow at 12:30 and I'll have to have some labs drawn to check my medication levels.  I'm hoping / praying that everything goes smoothly tomorrow and everything looks good?!  

This afternoon we ran a couple quick errands and then got some sweet drinks at Dutch Bros for a little outing!  My afternoon got even better when my friend, Giana Schumacher and her family stopped by for a visit!  It was good to see some friendly faces and have some girl time - what a great way to wind down the day!  

I think I'll retire on that note and watch the Royals - hopefully we avoid a shellacking like last night....flipping Yankees.  Goodnight!  Peace and love to all!   

Exodus

Good day, mates!  Hope you're all having a great kickoff to summer?!  Mine is going splendid - I'm another step closer to going home yet this summer!  My family and I were praying for a call in May but never in a million years did we think it would be May of 2026?!  We were initially told that once listed, it could be up to a two year wait.  My family fought like gangbusters to get me on the list and I even had some help from our good friend, Jeff Seibel, and Senator Jerry Moran!  Senator Moran, you have our support and our vote 100%.  Many thanks to everyone for all your thoughts, prayers, and contributions - we are truly blessed!  

Today was busy with a couple last suture removals, IV removal, and meetings with various healthcare disciplines.  Mom and dad passed the test when it came to medication administration but they've been dabbling in that for the past 16 years, so that was a piece of cake!  The pharmacist came by and made sure that the pill box was big enough for the plethora of pills I'll be taking but that's just the cost of doing business I guess?!  As time goes on and I get stronger, the number will decrease but I'll always be on a couple anti-rejection meds that need to be taken at the same time each day!  Again, we are so grateful and often talk about the donor family that made this all happen for us - you will always be a part of our crazy family whether you like it or not?!  

They decided to hold off on the echocardiogram today and are just going to do it on Thursday, May 28th after my 2 week post-transplant heart catheterization.  That helped to speed up the checkout process today!  The time it was all said and done, we were dismissed about 1:00pm today!  Dad and I made our way to the Donho to unload all our things while mom and the rest of the crew got westbound and down.  We are semi-settled and the rest of them made it home safely, so another successful day!  It sure was nice to leave the hospital with my family and I'm excited to not sleep in a hospital bed tonight!  Time to say some prayers and get some shuteye!  Goodnight, I love you!  

                19 in the morning & 7 in the evening to be exact
         

                                 My circus, I mean family

                                         Donho, Day 1

                                               WOW!

Memorial Day 2026

Hello all!  I hope / pray everyone had a great Memorial Day weekend with family / friends and remembered those watching over us from our heavenly home?!  Hopefully tonight is the last night I blog from the hospital?!  The plan is to be discharged tomorrow after all the necessary paperwork and an echocardiogram!  Mom, Gemma, Warren, and Layla are heading west to begin all the summer activities!  I get to at least move out of here and take up residency at the Ronald McDonald House (Donho as we like to call it) for the next few weeks!  It may not be home but it sure beats dad's cooking!  Say what you want about McDonald's but what the Ronald McDonald House Charities does for people is out of this world!  My family and I are forever indebted to anyone that donates or contributes to this organization - THANK YOU!  Please save those pop tabs / beer tabs! 

Not a lot of info to share from today!  My family and I didn't kill each other in here yet, so that's a big plus!  We did have to delicately balance the solitude and the family circus but like I said, no one got seriously hurt and we're all still talking so we'll chalk that one up as a win!  The rents have been giving me my meds today and taking care of the incision that is healing up quite nicely!  I'm officially off all monitors tonight so they must be serious about this whole getting out of here tomorrow?!  I'm sure some here appreciate the chaos we bring to the table while others are probably quite thankful we're leaving?!  Either way, it's that time, so we're taking the show on the road!  Time to hit the hay, I love you, and I pray for you all as I appreciate all of you praying for me and my family!  God Bless.  

                     Guess nobody else really wants to leave?!  

                                            Sista salon

                                                  ?!

                                         

     

  

   

I don't read the articles.

           Excuse me, I'll use as much ranch as I dang well please.

                                         Sisterly stroll

                                          

                                               Cheese!

                                

TGIF

Howdy folks!  Hope you all had a great Friday!  Please be safe and have a fun Memorial Day Weekend!  If you're traveling, watch out for them smokies - probably gonna be thick out there?!  I wouldn't know cause I'm stuck here, but guess what?  Tuesday is project get the sam heck outta here - if everything goes as planned?!  I'm so excited!  All those thoughts, prayers, and good vibes y'all been sending work miracles - don't ever discount them!  

Today my family had CPR training bright and early but everyone passed so check that off the list for saying sayonara!  We also had some transition training for when we leave the hospital next week!  Then it was time for a meeting with the pharmacist to go over all the meds that I will be taking.  Next Monday is basically the nurses monitoring the rents caring for me and proving their competent so say an extra prayer for them, JK - they've gotten me this far!

I put the finishing touches on Gemma's nails before she goes to church camp next week with some friends and got Layla's done as well!  We splurged for dinner tonight and used a door dash gift certificate from some good friends and had Chipotle - YUM!  We all got to hang out together today as a family off and on which felt good!  We've made new friends down here and even ran into a couple families from Hays here - we pray God's blessings on all of you!  I finished the night out by getting a shower which felt oh so good and hoping for a good nights sleep!  That being blogged, it's time to saw some logs!  Goodnight, I love you all! 

                      Layla practicing her chest compressions!

                          Rounds in the room = packed house!  

                        Leaving my mark at the chapel patio

                                                Vittles.
                            

                                    

  

So Happy It's Thursday!

Greetings and salutations my good people!  I hope and pray you all had a good day cause I'm a poet and didn't know it!  Not really, just a girl - a whole hearted girl and I gotta tell ya, it feels good!  I had PT and OT this morning!  We did some walking and other activities to help strengthen the ol' ticker which I tolerated quite well!  So well, that dad and I decided to go exploring the hospital while we waited for my ma, Lee, and the graduates to get back.  We found a new cafe on the other end of the hospital that is all gluten free which is music to my ears beings I was recently diagnosed as having celiac disease!  On our way back to my room, we ran into one of my surgeons, Dr. O'Brien, and he was amazed that I was up walking around where we were less than a week after my transplant!  

After lunch, we welcomed the fam back and played a little bingo!  I won a sweet Royals lid but this was after someone already bingo'd and won the Owala bottle before me - dang it!  Speaking of the Royals, lets hope for a better series with the Mariners than Boston!  Where was I?!  Oh yeah, we had a meeting with infectious disease to go over some of the do's and don'ts - a whole lot more don'ts than do's but that's understandable with the state of my immune system for at least the next 6 months to 1 year!  I'm still so far ahead of schedule, that it's surreal, so I really don't care - let's just hope and pray this trend continues!  I was super hyped that Gemma brought down all my nail supplies cause I was going through some withdrawals!  My family and I are continually reminded of our blessings every day, now more than ever!  All for tonight!  God is Good!  Love to all!

                                     Got my crew back!

                                      Lee loves her bubba!

                               Doing my thang with Gemma

      

Hello 4th Floor

Thank heavens!  About 1pm this afternoon, I was transferred up to the 4th floor out of the CICU!  It's WAY more laid back up here - I hope to get some more rest and further my recovery!  Last night, after I blogged, the nighttime docs were rounding and said it was time for the PICC line to come out so at 10pm, I had it removed!  Ah, talk about relief having that mainline out of my neck!  I rested a little better but still had the usual intensive care unit checks for good reason!  I was a little saddened today that I wasn't able to attend Warren's 5th grade graduation and Gemma's 8th grade graduation but was able to live stream the 8th grade graduation!  Congratulations to all the graduates today and last weekend for that matter!  I had lots of friends that walked the stage last weekend and I haven't forgotten you, I'll catch up with you later this summer!  

Not a lot of news to share today with the move upstairs - a lot of hurry up and wait but it was worth it!  I did take a stroll around the entire CICU again today and then did some exercising with PT!  After moving to 4th floor, I was hungry and asked if I could go down to the cafeteria to look around?  To our surprise, they granted me the wish as long as I signed out and promised to come back!  It was so good to spread my wings a little but I was ready to get back to my room after a short stroll through the cafeteria and the gift shop!  All in all, I'm one step closer to getting out of here, but don't want to rush it and know that there can be set backs!  It's crazy to think that just a little over 6 weeks ago I was listed on the transplant list and 1 week ago tonight, we were east bound and down heading this way!  By the Grace of God this is all working out for me and again, I can not begin to tell you how grateful me and my family are for all of your support!  I love you all, thank you! 

                                       Bye, Bye PICC line

              5th Grade Graduate of Woodrow Wilson Elementary 
                                  
                                              Cheese!

                   Gemma graduating from Hays Middle School

                

                                                 

Post-Op Day 4

Good evening blog readers from hopefully my last night on 2nd floor cardiac intensive care unit!  For not sleeping the best and starting my day under the gun, I won the gunfight.  Sleep was interrupted from the usual vital checks, medication administration, x-ray, etc, etc!  I did sleep pretty good from x-ray at 5 am til about 8 am when my team of docs rounded and made the decision to have the drain tubes and pacer wires removed!  With the mx schedule at the time and most all of it on board, it was the ideal time to get the show on the road.  I get a little anxious whenever it comes to the drain tubes, especially eradication, so they gave me little versed to help which, well, made me loopy!  The family showed up just in time for the main event and it was on!  We had to remove the wound vac over my incision (which looks muy bueno - kudos to my surgeons) in order to get to the stitching holding the tubes in place and the pacer wires!  This is where things started to get a little dicey to say the least!  After all that adhesive was torn from my flesh, it was exodus pacer wires - OUCH!  Next, the stitches securing the tubes were snipped, and I was told to take a deep breath.  Why, you ask?  Ha, it was because they yanked both drain tubes out at the same time!  YOW, those dad gum things must've been tied in a bowline knot around my heart and thoracic spine cause it took several tugs for them to get them reeled out of me!  I was for dang sure awake now, but oh my did I feel better after all the endorphins settled.  

The plan was to replace the wound vac over my incision but after re-inspecting it, they thought it looked well enough to not have to drag that dang thing around anymore!  One more tube gone.  Next, we ixnayed the final arterial line in my left wrist - bye bye!  I did have to receive just a little calcium today as I was a touch low but no biggie!  The plan is to say good bye to the PICC line tomorrow and then transition to the 4th floor.  I will have another echo tomorrow but that can be done on either 2nd floor or 4th floor unless something goes drastically south?!  I held off on OT today but did walk around the entire 2nd floor today with PT - that was a workout!  All in all, I'm feeling great, thanks to all you wonderful people and your outpouring of support!  Better hit the sack.  Night, Night - don't let the bed bugs bite!  I love you, God Bless! 

                             

Post-Op Day 3

 Monday, Monday, so good to be me - thanks to God for putting all you wonderful people in our lives!  We couldn't do it without you!  More strides today!  Meds didn't necessarily disappear today but they are changing from IV form to pill form which is a good thing!  That tower of medication and tangled lines is dwindling!  My chest drain tubes still hurt like hades when they strip them out - feels like the vacuum is trying to turn me inside out!  Good news though, the output is much less and more serous so there is talk that those things may go by the way side after rounds tomorrow morning - fingers crossed!  The PICC (Peripherally Insterted Central Catheter) line is also rumored to becoming not necessary either?!  My team thinks that by mid-week I could be moving to the floor (out of the intensive care unit) and that is one step closer to blowing this popsicle stand - kind of (I have to stay in the metro area for a couple months after leaving but more about that later)!  I hear that they are pretty full everywhere here which makes me sad so please pray for everyone here and everywhere in general - we all have our crosses to bear and we all get by with a little help from our friends!  

I'm pretty beat again tonight and my pain waxes and wanes but they're also pushing me from PT to OT to massage therapy!  I've been up and walking a little but not too far cause of the leash of lines I drag around!  Please enjoy the pics and I'll do my best to send some of the rain here back west!  Yup, don ho (Ronald McDonald House) lost power and Gem and Bubba got stuck in the elevator but don't fret Lee was there to help WAY past her bedtime!  She outta be a real treat to deal with tomorrow, LOL!  All for today, peace and love to all!  

                               Squeezin on another pooch

                                        Me and Gemma

                                          Crazy Siblings

                         Momma and Gemma clowning around

                                   Can't make this stuff up!

                                      Layla to the rescue!  

                                            

Post-Op Day 2

 Hola and Happy Sabbath!  What a great day!  I made some great strides but boy am I tired - don't know about how much rest I got but hopefully tonight?!  My docs took me off of morphine this am and put me on dilaudid for the discomfort.  This helped my pain overall and also helped my nauseousness!  The epinephrine was discontinued today because my ekg and echocardiogram looked great and my heart felt like it was going to jump out of my chest!  My nitric oxide also came off as well but I'm still on a couple liters of oxygen while my body adjusts to this new 4 chambered pump - this baby rocks!  My innards just aren't quite adapted to these new pressures and all this blood flow!  I sat up in the recliner for about 15 minutes and made multiple trips to the bathroom which wore me out!  

My family is taking great care of me!  My momma manages to take care of me in the hospital and all my siblings like always - even out of her element!  Gemma makes sure my braids are nice and tight - just gotta teach her how to do nails!  Layla keeps the wagons rolling and can't wait for the pups to be back on duty during the week days!  Bubba is here for comedic relief and watches over my girls when were not together!  Dad, well, he's the like the custodial engineer - how my brother ever camps with him in a tent is beyond me!  I promise to get more pics soon!  As always, I am forever grateful for all the things you've all done for me and my fam!  Night, night and God Bless! 

                      Dad and Lee went fishing in the atrium
  

Post-Op Day 1

Greetings from the CICU (Cardiac Intensive Care Unit) in KCMO!  Hope you're all well and having a great weekend so far?!  Today was a wrestling match but I won!  I had a bit of trouble sleeping early this morning but about the time the rooster crowed and the docs rounded, I decided to get a little shuteye!  This could be in part to the benadryl or other drugs I was given but nonetheless, I rested comfortably until about mid-afternoon when we had to change out a couple arterial lines!  Neither were working so I got rid of them and the VAT (Vascular Access Team) ladies were supa good and smooth on the re-install but only put 1 back in (2 steps forward, 1 step back)?!  It was so smooth and I was feeling so well, that I sat up and decided clear my pipes a touch!  I accomplished this by hacking around and self administering the mucus sucker (w/ close observation).  Another score; advantage, me!  Oh, I almost forgot, this am I also got rid of my NG tube and my catheter, boy did that feel good!  I've managed to keep some water down and even a little bubbly seltzer water!  I was trying to stay awake until about 8 bells tonight so I don't get my days/nights mixed up because that can ultimately hinder my progression out of the CICU!  However, after the beverages, it was time to powder my nose!  With the help of momma and the nurses, I got out of bed and hit the commode!  I had to pee like a racehorse - filled the hat and then some!  After all this I was spent to say the least and needed to rest a little so we'll see how the night goes?!  All in all, it was a very productive day with lots of progress made!  I'm off of my sedative medication as well as a couple others!  My team has kind of warned me that post-op day 3-4 can be a little rocky with pain and nauseousness but time will tell?!  I am thankful for all of you and the Lord above!  Good Night, Go Royals!     

Heart Transplant Complete!

 

Well, here it is - my array of monitors and meds!  Just about everything you could imagine minus the kitchen sink!  I got out of surgery about 1:30 am this morning and all went well!  I'm resting / recovering comfortably for the most part!  Occasionally I wake and want to sit up / remove my breathing tube by myself but they've restrained me, ugh!  They tell me it's best I remain sedated while my body adapts to my new heart!  The team did decide to extubate me a little early because my labs looked good and if they didn't I was going to take matters into my own hands come heck or high water!  The nitric oxide remains just to make the breathing a little easier while I gain some more strength!  The meds will hopefully start to disappear after that as well or transition to pill form.  Thus far, my docs say I'm right where I should be!  They're pleased with my progress and my echo looked good earlier today!  I'm running a slight fever but they say that could just be from the procedure, we'll see?! 

I am quite the comedian from time to time when I wake and boy do I miss my family!  My team of docs, the nurses, and my family have all been quite accommodating!  I really need to get a good night's rest so everyone can recharge their batteries - the last two nights have been a little taxing to say the least!  Totally worth it though - my lips are rosy and my skin is a little darker (circulation is flowing like never before)!  All for now, gotta get some zzz's!  Thank you to everyone for all your thoughts, prayers, messages!  You have no idea how much my family and I appreciate it - they work wonders!  Good Night and God Bless!

                                        Silly Siblings

                                 Benson, Gemma, & Layla

   

Leave the Liver

Greetings my peeps!  WOW, what a day!  I'm telepathically sending this message to you because I'm still on the operating table - all I can say is good drugs, really good drugs!  

I went back an hour later than expected and was delayed a little more with my donor but all is well, really well!  The heart is a perfect match and my liver is overall, nice and soft/spongy (good thing) with only a couple areas of cirrhosing.  No varices anywhere, so I'm keeping that baby!  My donor family will bless another family as well - God Bless you all.  We are forever indebted to you!  My docs feel that replacing my heart (root cause) will not only correct my liver issues but also help out my kidneys that have started to falter somewhat also!  Speaking of the new ticker, it's supposed to arrive around 8 bells tonight.  Once here; we do the ol switcharoo (anticipating ~ 2 hrs), sew it all together, and stitch me up.  I'll be monitored for a couple hours afterwards to make sure she's purring like a kitten and then I'm headed back to room #74 CICU with the fam!  Realistically, I don't plan to be back in my room until late tonight / early tomorrow morning - my family doesn't need to sleep!  As for myself, I'm gonna have to sleep this off for a day or two while I mend and the meds start to come off - all depends on my numbers?!  Speaking of sleep, check out these pics:

                                             # BRAH

                                                                

                                       PAPER BEATS ROCK

                                               BOOGA

                                                               

                                     LAUGHS WITH LITTA

                      SAWIN LOGS WITH THE HI-PAD BLARING

                                             WET WILLIE?!

                     HEY BUBBA, I MOUSTACHE YOU A QUESTION

                                             MONACLE?!

Long Time, No Post, Buckle Up.

 WOW!  Where do I begin?!  I'll give you the quick, dirty version - hopefully long story short!  The OEM ticker can't be tweaked anymore - time for a new pump (heart)!  We were told that this was probably inevitable but had hoped to kick the can down the road a little further!  The Good Lord has a better plan so we will trust in him!  In the last few months we have also learned that the ol' liver may need swappin as well - single ventricle hearts such as mine can cause some pretty extensive wear and tear on one's liver.  A recent biopsy showed that there is considerable cirrhosing of my liver and it may not be able to regenerate / recover?!  That will be a game time decision later today (5/14/26) when this show gets on the road!  They're thinking about 11am?!    

I was put on the heart and liver transplant list April 6th of this year!  We were told that it could be up to a 2 year wait, but less than 2 months later - here we are!  We got the call about 8pm last night (5/13/26) and were told to start making our way to Children's Mercy Hospital in KC, MO.  We started frantically packing and quickly saying our goodbyes as we made it here about 1:35am!

Thank you to everyone for all for your love, thoughts, and prayers - God is Good.  Please also remember the individual and their family that is making this possible - we love you and pray for you!  THANK YOU, THANK YOU, THANK YOU to this family - we don't even know you but hope to meet you some day!  Time to try and get a little shut eye!