All I want for Christmas is a new kidney???!!!

I've been sitting here for the last 30 minutes trying to figure out a cute and clever way to start this blog post.... and I got nothin'!  So many thoughts are running through my head right now, that I want to share with you all and it's all coming out a jumbled mess.. My emotions are literally all over the place, between lack of sleep, the holidays, getting ready to send out our oldest boy for 2 years, dr's appts, school award ceremonies that I always seem to miss, I feel like all I've done lately is cry...

Where do I start.........A year in review,,, nah, it's all already on here... how about the last couple weeks in review...

Our oldest daughter, Todd's sisters, and Mom all held an auction on Facebook to raise money to help us with our medical bills and living expenses until disability kicks in.  This has been, indeed, a very humbling experience.  My husband is a proud man, who loved being able to give his family whatever they needed or asked for for that matter, and these last couple years have been a huge struggle for him to go from bread winner to,,, watching his wife go out a bust her butt for pennies compared to what he was making.  It has been amazing to watch people we don't know, who don't know us, donate items for this auction, bid on items donated and OH, the humanity of it all.  (is that the right term?? probably not,, I'm tired!)  It has brought me to tears on many occasions, and truly humbled us.

Our oldest son is leaving for an LDS mission for 2 years, on December 18th for Georgia Macon.  This is a huge opportunity for him.  This was his decision, We have told him for years that although this is something we hope he will do, it had to be his decision and we were ok if he didn't want to go.  When he decided to go, which honestly has just been in the last 8 months,, we were thrilled.  Then reality hit me,, my baby boy would be gone,,, serving his Heavenly Father for 2 years, 24 months, 104 weeks, 730 days!!!!!! AUCK! seriously?  I'm not sure I can go that long with no hugs, no him sneaking into my room and jumping on the love sac to join me in watching a movie, randomly hugging me,,, because he can see I need it,...   no "love you mom" at the end of every night...(great now I'm crying AGAIN!!!!!! grrr) I'm being selfish.  I don't want to share my kids with anyone. I want them to stay safe in my mommy bubble forever. (Meanwhile Todd is thinking, "go my son, conquer Georgia, grow, learn, come back a man, blah blah, blah)  They can get married and have my grand babies, but they have to stay in my mommy bubble.  I'm scared to send him out there.  On the other hand, this is a huge leap of Faith for me.  I trust that my Heavenly Father will watch over and protect Jacob. I know he is going to rock Macon Georgia! And make so many new friends!!!  He will grow so much.  This is where he needs to be at this point in my his life.  (I still think they really need to cover the whole "you have to let them grow up and leave the nest" part in sex ed and family living classes,, just sayin'!)

Work has been crazy because, well,, it's fourth quarter!  enough said??  I go into work anytime between 2 am -6 am and work 8-10 hour shifts. Yea I know, it's the norm for some of you,,, in fact some of you work longer shifts, and I really am blessed to have a job that I absolutely love!

I'm just exhausted, and stressed. This is a new position for me, remember I was a stay at home mom for 15 years, (YIKES has it been that long??), I feel like every time I take a step forward I get pushed back two. I am having to learn tact, it's a trait I seemed to have missed out on, to tone down my sarcasm, way harder than it sounds, and to be a leader.  Kinda overwhelming for a person who's biggest battle for 15 years was getting the kids to do the dishes,, can't spank employees,, they kinda frown on that,, GO FIGURE! And then come home and leave work stresses in the car or better yet at work, and put on my parent/wife hat when I walk through the door, when all I want to do is crawl into bed.

Christmas... it's leaner this year than in years past.  We have talked to our kids about it, and bless their hearts, they get it, they understand. At least they say they do.  Doesn't stop a mom from feeling guilty about not wanting to give her babies the best Christmas ever though,, so this year we have made hygiene bags and collected blankets and a few toys and are taking them to a local family shelter this Saturday for Christmas.  When we talked to the kids and asked them if we could do this instead of struggling to spend money we don't really have, on ridiculous items we don't really need, they all said "YES!"   My heart overflowed!  They will still have one present under the tree from us, and from each other,, stockings will be slimmed down quite a bit (I can easily spend $100 on EACH stocking, a very sore spot with my husband as he doesn't seem to grasp how much I LOVE STOCKINGS!), and there will be nothing under the tree that isn't needed or useful.  And we are all ok with that.. We have received so many blessings this past year that Todd and I felt it was important to give back and to teach the kids, (the youngest ones mainly, the older ones get it) that doing service for others is the greatest gift out there.

Now onto the title of my post... are any of you still out there reading this?  Sigh

Todd had a dr's appt about a month ago and was told his kidneys were on their final lap.  I don't remember numbers and where his levels were, I wasn't able to go up with him to his appt's that day.

The dr's told him no more 90 days between visits, they wanted to see him every 4 - 6 weeks.  Ok no problem.  We went up yesterday, well he went up the night before because he had to get a bunch of lab work done, and I went up yesterday right after work (just so you understand why this post is such a jumbled mess, I was up from 9 pm Monday until 8 pm tuesday, and got up at 11 pm tuesday to go to work wednesday morning, thus the lack of brain function!)

I made it in time to go to two of the three appt's with him.  Dr Leon, who is our kidney specialist walks in and says basically, ok this is it,, the next time I see you, we will need to figure out what kind of dialysis you want,,  Todd's creatin levels are at a 3.36 with a gfr of 21.  GFR is some medical term that gives them the percentage at which your kidney's are functioning, (thank goodness for the notebook app so I could take notes during this visit), When your kidneys are function at 20% you are eligible to be on the transplant list, NOT 1% before you hit 20.  At 15% with symptoms of loss of appetite, tiredness, constant itchiness and others I'm sure the PA mentioned, you go on dialysis.  He is still loosing alot of protein in his urine, and his potassium levels are high.

We knew this was coming.. and honestly, through the Grace of our Lord, we have made it further than we thought we would.  We were expecting to be on dialysis NOW, as were our dr's. So, Dr. Leon told us there are two kinds of dialysis, one you do at home, every day, at night for 7 hours while you are sleeping, and one you do 3 times a week at a dialysis center.  He thinks we are perfect candidates for the at home dialysis, and I sure hope he is right.  Not that I've ever had to do either one, but the at home one sounds easier to me.  With the exception of the threat of pulling out your port in your sleep and bleeding out.. (thanks bestie with all the medical knowledge for that little tidbit!)

We go back on the 21 of January for more lab work and to get on the transplant list, make an appt to meet with the transplant team and get that ball rolling.  Dr Leon said obviously he would prefer a live donor, and if we can find one then we may be able to skip dialysis all together.  When I asked him what the criteria was for a match, he said we would get all that info when we meet with the transplant board.  Both dr's are very happy with where Todd is at.  He is doing everything he himself can do to ensure he is not damaging anything any further. 

I, on the other hand, just want my healthy, easy going, laid back, non tired husband back. I try not to dwell on it, to think about it or over think it.  I try to hide my stress from our boys and Todd, the last thing he needs is to stress about me stressing about him.

 I sit here and think, how on earth can I do this on my own?? Jake has been my 2nd hand man, his dad's chauffeur, my errand runner, his dad's company during the day, and evenings.  I listen to my scriptures on my way to work every morning and that really helps me get through the day without needing bail money,, no seriously.  I am scared to ask for this burden to be lifted from our family..Heaven only knows what's around the corner for pete's sake! I know there is something we need to learn or teach someone from all this.  I wish I knew what it was. I know the Lord doesn't give us more than we can handle,, I firmly believe that.  Some times I just wish I felt as strong as the Lord seems to think we are. 

This is Jake's mission area, where he will be for the next 720 days... :)

and for those of you who missed it, or want to listen to it,, here is the link for his farewell talk he gave this last sunday in church:

it's not  video, just an audio of his talk.

We hope you all have a happy and joyous Christmas season, and may the true meaning of Christmas linger in your hearts and homes the coming year! 

Love The Johnson Clan!

Please no!/Please KNOW!

Trials are funny things. We don't often know, at least I don't, if its Satan trying to steer us off the path of righteousness or if it is Heavenly Father saying to us "hang in there, you can do this."

These last couple weeks have been a struggle.  And I have been putting off posting because I hate whiners!  I'm more of a, if life hands you lemons, you cut those suckers and squirt the advisery in the eye, kinda gal! 

Todd had dr's appointments a couple weeks ago, that I was not able to go with him for due to work.  So Jacob, being the awesome young man he is, drove his dad to St George and chauffeured him from one dr to the next all day.  After blood tests and looking at his glucose levels for the last couple months, the doctors all came back with the same diagnosis.  His kidneys have lost their second wind.  His creatin levels are at a 2.8.  These are levels we want below a 2, at 3 the docotors start talking dialysis.  We have been worried about his liver function and my bestie and I have both noticed that he is starting to look a little yellow, the dr's say his liver is ok.  Not great, fantastic, no worries.  Not horrid, dying, non functioning, just ok.  His body is running on half the blood of a normal healthy man his age.  Thus putting a huge strain on his body and organs.  His kidneys are not filtering the blood like they are supposed to, which is causing a whole bunch of problems, including his constantly being exhausted, I mean seriously exhausted. To the point where just the thought of getting undressed and taking a shower makes him want to nap, never mind actually doing it. (you think I'm kidding,, come on over!)

Ok, we can deal with this, we knew this was ultimately what was coming,,, the transplant I mean,  and it seems to have peeked now.  So there is no more waiting 3 months in between visits, we now have to go every month. Which is great because they can keep a closer eye on him. 


A few weeks ago we found a killer deal on a cute little bug that I really wanted, and we were able to buy it, as my car was needing to go to another home.  Well, last week, I was driving home from a meeting with Todd in the car, and I hit a dip in the road.  YES I was going the speed limit, get pulled over once by the Henderson NV police and you would too!!, well I guess I hit it just right, because not 15 minutes later, Todd went outside and I heard him yell, WHAT DID YOU HIT?.  OIL was gushing out of the bottom of my car.  Yep, HUGE hole in the oil pan.  OK, we can deal with this too,,, sigh.  We paid our tithing, we are doing everything right, have a little faith, it'll all work out... right?  This just means I have to take the truck to work for the next few days until we can get it fixed.  Any of you ever leave your house at 3 am, even in the desert it's freaking COLD!

I hop in the truck, which I've been telling dear hubs we need to trade in, and crank the heat,,, after a 30 minute drive to work, my teeth are chattering,, seriously, fingers are frozen around the steering wheel, can't feel my toes,, its warmer outside in the rain than it is in my truck kinda cold.  ARE YOU KIDDING ME?  Breathe Rhonda, just breathe,,, we got this! My sweet hubs, is trying desperately to read the owners manual and find out if it's just a fuse or if its the heater core.  *remember he's blind!, cant see hardly anything*

Last night I open the dishwasher to start loading the dishes, and there is a pool of water just sitting there in the bottom as happy as can be growing all sorts of bacteria, not really but go with me here, it's been like that all day.  10 yr old boy doesn't think to say "hey mom, there's still water in here" when's he unloaded it the night before... So I put it through a rinse cycle to try to get it to drain,, nope, water is still there, thank heavens there's not more water in there,, same amount, but it's just sitting there happy as a clam. Mocking me really at this point,, saying, "whatcha gonna do??"

One more thing to frustrate the hubs, two years ago, my car would've been fixed within the hour, the truck would've had heat and my dishwasher would have been taught a lesson on what happens when you talk back! 

Between all this going on at home, on top of my sweetheart's health, I've got a 18 yr old young man, whose chomping at the bit to get to the MTC and start on the next phase of his life, although between you and me he's just a little too eager to leave me!, not really but I cry every time I try to figure out what I'm gonna do when he's gone.

 I've got 4th quarter going on at work, and big wigs that decided that it would be a fantastically wonderful time to come drop by our store and make sure we are up to par on the BIGGEST ONE DAY SALE OF THE YEAR sale day.. and district managers pulling me in all sorts of different directions, totally new thing for me, being someone they need to talk to.

And we are trying to pay our bills with no assistance. hmmmmmm  At $11/hr, 30 hrs a week, yea I can barely cover rent, and we've done great the last month or two, however, there is just no way we can pay for all these repairs on our vehicles and dishwasher and still pay our bills.  (So not asking for help here!)

We were at a meeting at our church a couple nights ago and our Bishop saw us and asked how work was going.  I just looked at him and walked away, I didn't want him to see me crying,,, AGAIN!... seriously I swear that man thinks I'm a mess, which I am, but who likes to show weakness??  He runs through a classroom in the building and cuts me off, as I try to avoid him, he grabs me and says in a calm rational voice, that I have a love/hate relationship with, "it's ok, You are being tried, hang in there, You're doing everything right and Satan hates that. He is working overtime on your family" 
I know this, rationally I know this. All I can think is NO!  Please NO! I can't deal with anymore.

You need to know that the Bishop is the only other Human being we have let into our marriage, he has helped us through so much.  We can tell him anything and know we are not being judged.  So I take his counsel to heart.  In my eyes, where I am at right now, he is the closest I can get to my Father in Heaven short of hitting my knees and praying.  So when he says something, I tend to listen.

We head home, and I troll on facebook and find this :  (this is a family in Herriman Utah, that I have been following for quite a while. they recently lost their 10 yr old boy to acute heart failure, he was diagnosed with Duchenne Muscular Dystrophy,in 2005)

Here is what I read:

PLEASE, NO / PLEASE KNOW
Natalie and I left Mitchell’s room as he drifted sleep. Mitchell was slipping away. Everything was escalating and we knew time was running out. We both sat in the hall just outside his room and wept. Our tears came from a well of the deepest sorrows. I eventually looked to my weary wife … exhausted, frightened and heavy with grief. My heart broke even more because I knew this woman, who has the tenderest of hearts, loved her little boy in ways only a mother can know. The “fix it” father in me desperately wanted to make it all go away, but I could not.

There were many occasions that I prayed to God “Please, no.” I petitioned over and over that somehow … some way … my son would be spared. Yet, every medical intervention was riddled with peril. Too much was happening, too late. Every path was a dark path. Even still our prayers continued, “Please, no.”

At some point during my wrestle of the soul I received a distinct impression. After I had cried out what felt a million-and-one times “please no” I was finally answered with “please know”. What followed was a most unique spiritual experience. A peace and understanding had fallen upon my wife and me; and while we didn't have words to describe what we were feeling, we had a strong sense that we were being told “Please know, everything is as it’s meant to be. I've got this.”

Over the years I have come to understand that mortality, our life on earth, is a schooling the soul. It is an education that takes a lifetime to complete. There are books to study, things we must do, knowledge and faith we must acquire … and there are tests. Oh, there are tests.

There are tests of prosperity; what we do when the sun is shining and our pockets full or overflowing. There are tests of faith; what we do when the lights go out. Test of hardship; how we respond to our difficulties. Test of anonymity; what we do when nobody is watching. So many experiences we encounter … so many learnings, if we become students of the soul.

When I consider this hardship I pray that the child in my heart can rise above this profound sorrow. I know I can. And I will. But losing my son has broken every bone in my body, wrenched my soul and pulverized my heart. With all that I understand and have felt spiritually my heart still cries out for my son and I miss him terribly.

This hardship has taught me, however, that while I may plea to God “please no” … if the answer is no, I must change my plea to “please help me know.” That is the foundation upon which we grow.

.......

My brick wall came tumbling down,  I bawled.  I've been praying wrong, asking for the wrong things. What has happened to my faith?  Time to go back to the basics.  I am a firm believer that everything happens for a reason, I also believe that I don't always know the reason, but I trust He who does.  I will pick up my bootstraps, I will put a smile on my face and faith in my heart, and pray that I will learn from this what I need to.  Out of all of this I will become a stronger person, with steadfast faith in my Saviour, (I'm Canadian,, deal with the U!), I feel His arms around me every minute of every day.  Sometimes I just get too overwhelmed and forget He is right there waiting for me to hand over everything to Him, so I can keep doing what I do without stress and needless worry.  Perhaps this is what I need to learn from this,, that we, as a family are strong enough to say "Ok Lord,, we are letting go, we KNOW, You got this!"

The Wall

I think there comes a time, when no matter how strong we are, we hit a wall, it may not be for days, weeks, months or even years, but we will hit that inevitable "I'm over this wall!"

I hit my wall last night.  Hubster has a really hard time with his meds, I get it, I really do.  Some days he just sits on the couch and doesn't say a word, I have come to realize this is him holding his tongue.  Other days he flys off the handle over simple things like cereal not being put away, or a towel used to mop up juice on the floor still laying there after hours of having done it's job.  Something about being handed essentially a death sentence tends to put one on edge,, go figure...

After having a day where we are being pulled in 15 different directions and everyone at works needs you to do something right now, hey it's part of the job, we like nothing more than to walk into a happy home, with kids who are pleasant, a house that has had something done to it today, pickup up, vaccumed, something... the last thing we want or need is to walk into a home where you are again pulled in every direction,  "HEY MOM'S HOME, I need this, I need that, can I have this, can you do this for me, do you remember my password to.., MOM, dad said no!" 

But let's face is, being a parent is a full time job.  and when  your partner is down for the count, it is even more harrowing.  so yes, yesterday I hit a wall,, everyone was losing it, and I just wanted peace, and quiet and to not be needed for 1 hour.. 1 second even.  I locked myself in the bathroom and cried, and vented to my bestie, thanks Bestest Bestie!, and when I was done crying and venting, I laid in my bed and pulled the covers up and went to sleep, at 7:30 pm, because I was done. 

I am now up and heading out the door, to do it all again, because as parents, as caregivers, and as providers, as meanial as that whooping $11 per hour seems, this is what we do, it is what I do. We get up in the morning, we get done what needs to get done, and what doesn't need to get done,,, well sometimes that can wait until tomorrow, so my floors are not vaccumed, or mopped, the family room is cluttered, the bathrooms need to be cleaned.... For now, that can wait, maybe until I get home from work,, maybe until thursday, or friday,,, who knows.  Right now, they can wait.

Right now, I'm attacking the wall!! wish me luck.

Bless her heart!

I love our children, every single last one of them! They continue to amaze me as they grow into fantastic adults who make great choices and live life selflessly. 

Our oldest daughter read the blog post I posted a few days ago when I dumped my entire heart on here.  She decided to take it upon herself to try and help us, so she set up a website for donations,, here http://www.gofundme.com/4zgey0 Then she contacted the newspapers and radio stations in St George and asked if they would do a story on her Dad. She got a call back from one paper and they are running a story, not sure when, but it is the St George News that is doing it.  So because of this, her dad knows about her efforts and it is no longer a secret.  Through her efforts we have raised over $1500.00 in 5 days! 

 I am in awe of the love and support from friends, family and strangers.   People we don't talk to or see very often or have never met have donated.  We are humbled and brought to tears over everyone's generosity. We feel very undeserving of such love.  Thank you to everyone who has shared her link, read our story and help, whether it be by picking Todd up in St George and taking him to his dr appt's, or taking him down here to his eye appt's , or just calling or texting him to see how he is doing.. And to you all who text call, and check up on me to make sure I am still sane.  We love you all so very much, and would be completely lost without you.

The last few days have been good days, Todd has been able to do more and keep things down. Although it feels like he is surviving on his anti-nausea medication on an hourly basis.  

I am off for the next 2 days so I am hoping to get caught up on laundry and at least pick up a bit today and let my sweetheart rest as much as possible, then enjoy Sunday at church with my family. 

Love to all, embrace what you have today and treasure it!

Catch 22

 I tend to ramble when I blog, I have way to many thoughts running through my head. So for that I apologize now.  If I dont get them out,, my head will explode, and that would just leave a HUGE mess for me to clean up, which I couldn't because well, my head would be all over the place,,, see what I mean!!  :-)

With the exception of yesterday, these last couple days have been really hard.  I go to bed exceptionally early, or rather try to, due to my crazy work schedule during the holiday season.  Yes we are in the holiday season in the retail world, and to those of you who cry out "Let thanksgiving have it's day first!", I say,,, we did.. October 7 was thanksgiving,, In Canada, so let the Christmas bells ring.  Anyway, I digress,  Hubby has had a really rough few days.  Between all these stinking meds he takes and struggling to keep food down, he tends to sleep most of the day.  well, not really sleep, but more lay down and think his stomach calm.  I leave for work and he's in bed, I come home and he's in bed.  He's gotten up in between to get our youngest out the door for the school bus, and he calls me after he leaves letting me know how the morning went and how he is feeling, then heads back to bed. (I panicked a couple of times when we came home from the hospital the first time because he didn't answer the phone when I called him and I had a friend go check on him to make sure he was ok, so now he calls to let me know he woke up and is breathing)

I always ask him "did you take your meds?" and the response is usually a long pause with a frustrated sigh.  I get it,, I really do.  I have seen what these meds do to him.  Yes they are keeping him "alive" right now.  Keeping his blood pressure down, keeping his heart from growing that horrid sac of fluid around it AGAIN, keeping his kidneys from shutting down for good and his body from retaining fluid and bloating up.  They are also keeping him nauseous, dizzy, light headed, foggy, quick to anger, and just about every other negative symptom out there.  Seriously, it's like the drug commercials out there,, "...may cause bloating swelling, temperment issues, diarrhea, sweating, nausea, vomiting, etc etc etc, see your dr if you have any concerns"  WHO WOULD WANT TO TAKE THAT?????

We have talked to the dr about this, and our dr laughed good heartedly, saying, "that's how I know you're taking your meds.  If, when I ask you how are you feeling and you tell me fine, and I ask if you are taking your meds and you say yes,,,, I know you're lying"  Well played dr... well played.

It's hard for me to watch my husband go through this.  I am a fixer.  I don't like it when something is broken and I can't fix it or make it better. And he does really really good at masking all he is going through, to the outside world, but I see it daily.  I wish I could take his meds for him.  I wish he had listened to me over the years as I nagged him to take better care of himself. I wish the pharmacist that screwed up that prescription hadn't been working THAT day.  I wish, I wish, I wish......  I hope that anyone who is reading this blog that has diabetes learns from our mistakes.  Yes they are our mistakes,  I bought the groceries, I am the one who said, "we deserve a treat", and brought all that crap into our house over the years and sat and ate it with him.  I share the blame in where he is at. 

And now all I can do is hope and pray that whomever out there that happens to stumble upon this blog, and has that horribly silent and very deadly disease, will have their eyes opened and realize that a shot of insulin will NOT fix the high blood sugars,, permanently.  The only thing that will do that is diet, discipline and exercise.

That is all,, nothing more,,, nothing LESS!  I have heard of people who's diabetes all but disappears and they live with it, they don't suffer from it.  I wish I had listened to them earlier.



  

Just another day in the life....

It's been a while since I have blogged, and for that I am truly sorry.  Things have been going relatively well since our last dr visit.  Alot  has happened.  I got a new job with Macy's, which is now full time and a 25 minute commute each way.  Jacob, our oldest son, got his mission call,, YAY! He is going to the Georgia Macon mission, he reports December 18.  He is so ready to go, and kind of feels like he is in limbo right now. And my sweetheart is not in need of new kidneys,,,, yet.

I am so blessed to have the best husband in the entire world!  He has transitioned well into a stay at home dad.  I come home from work and he gets up to greet me and make me dinner, if it isn't already waiting for me when I come home.  He helps out with laundry, and keeps Levi quiet when I have to go to bed early.  I came home a few weeks ago from work and Todd offered to make me a salad for dinner, so I sat down at the table and watched him work. (not being sarcastic here, I really enjoy just watching my man!)  He reaches into the fridge and I see him stumbling with his hands inside the fridge, I ask him if he's ok and he claims he is... then I watch as he begins to slice a cucumber.  Tears fill my eyes, he is using his hands as his eyes.  he is gliding the knife down his fingers and using his fingers to measure how big of a slice of cucumber to cut.  I mention this and he goes quiet.  He doesnt say anything.  I quietly get up and grab the cheese for him (it's pregrated), and he says "No, leave it, I can do it, I have to know where things are"

We needed to talk.

My strong, tough guy, all American husband had kept from me how bad his eyesight had gotten.  He didn't want to worry me or stress me out any more than necessary.  Apparently me waking up in the middle of the night three or four times to make sure he is ok was not a secret.  He tells me he can see shadows, that is all.  He can make out shapes on good days.  I don't know what to do for him or how to fix this.  We have seen a retna specialist, and he was getting shots in the eyes every 6 weeks, but at $1000 a pop, that simply can't go on forever.  We had stopped doing his right eye about 6 months ago because they were no longer helping it.

People that come over to visit just dont realize how sick he really is.  His kidneys are still failing, which makes him excruciatingly tired on an hourly basis.  He has days, weeks where he can not keep anything down, where it takes all his energy just to lift his head.  Then there are days where he seems perfectly healthy, still using a cane on  a daily basis, he goes about his day as if he is healthy,, although he still needs to stop and rest every so often.  I watch as he stumbles to the couch because his neck is going to give out.  I watch as he gets ever so frustrated that he can't do a simply thing like sort the laundry, or find a utensil in the drawer.   I hold him as he cries because he says he has failed me as a husband and a father.  I watch as our oldest boy asks his dad if he wants to go on a father/son date.. son's treat, and Jake willingly drives his father anywhere he needs or wants to go.  I watch as our youngest son runs and grabs his dad's blood kit so he can test his blood sugars, and I watch as Levi reads to his dad the numbers off the meter, and asks "what insulin dad, and how much?"

I watch as my husband gets sicker and sicker and all I can do is pray.... pray that there is some way we can fix this.. pray that he's not taken from me yet.  That is a thought that is the very frontmost part of my thoughts all day long, every day.  My daily silent prayer as I leave my house is "Please Heavenly Father,, Let him have a good day!, Let him be ok when I get home"

I truly believe that everything happens for a reason, Todd, the boys and I have all learned so much from all of this. I guess we still have more to learn.  I have never once said "why me,, why us,, why now?"  I have always thought, "Ok the Lord knows we can handle this,,, let's handle!"  and if it's not us, it would be someone else,, and honestly,, I wouldn't wish this on any one of you.


 Someone tell me diabetes is an every day disease, and it doesn't kill any more.  Someone tell me it's ok, they can take a shot after eating junk.  Someone tell me it won't happen to them.  someone tell me I DON'T KNOW!  Send that Someone to come stay at my house for one week.  See what diabetes does when you don't look after it. 

I just want someone to tell me everything is going to be ok and soon I will have my handsome healthy husband back. 

I was talking to a friend of mine about all of this and how I needed an outlet and she suggested I blog... DUH!  I'm certainly up early enough.  So this will become sort of like a journal for me... for those who want to follow along.  And if no body reads it... it will be for me. I need it.  I need to let my feelings out without putting more stress on my husband who has to put every ounce of his energy into healing himself.  I try not to let him see me cry, I save it for when I'm in the tub, or right now,, while he is sleeping and I'm headed out the door to work. He'll never know. I'll come home with a smile on my face and do all I can to help him.  He doesn't need my stress to stress him out.  so thank you for letting this be my new outlet.  {if any of you tell him what I'm saying on here I may disown ya! ;-)}

Good news!

We went back to st George yesterday to see the kidney dr and get the results of his last blood panel we had done. The dr comes in and we chat, he tells us everything looks great, we are doing everything right and to keep up the good work. I asked about meeting the transplant team next month like he mentioned when we were in the hospital in February and when we were going to do that step, he gets on his computer saying "Yes, lets get you in in may!" Stops for a second and says,,,"Actually guys, I can't send you, your kidneys have gotten their second wind, they are functioning twice as well as they were in February, they transplant team won't even let me make an appointment!, WAY TO GO!"

WHAT?!?!?!?!!! Thank you all for the prayers and fasting! Don't even tell me it doesn't work!!!! Todd will still inevitably need a transplant, but in 2-3 years now. Not right away!!! We are ecstatic. And hopeful that by some miracle he can be healed without any surgery. Faith and hope.

So we will keep plugging along, doing what we are doing and ask you all to keep doing what y'all are doing. We go back up to the drs at the end of May, hopefully for even more good news!!!! We love you. Thank you for everything.

Yay for good news!

So our beloved dr Goodger came in this morning and told us Todd is doing much better. He needs to get up and walk around to see if he's going to pass out again, here's the place to do it!!

I asked Dr G about dialysis and he said when kidneys are at a 4.5 is when they start looking to dialysis. Todd was at a 4.1 yesterday. This morning his kidneys are at a 3. Something. Dr. G couldn't remember what it was be he was thrilled!! Which makes me thrilled.

Todd and I walked the floor before lunch and when we came back to the room we saw a sign posted on the doorframe. Made us both chuckle.(Most of the patients with this on their door are way older than Todd.)

Our goal is to be able to go home tomorrow.

At least we were in st George!

Mom, MOM!!MOM!!!!!! Was what I heard being yelled out if my daughters mouth. I come around the truck and there is my sweetheart, legs under him just about to hit the asphalt. I run to him and catch his head as it slightly bounces up. This has been my worst fear since we left the hospital a month ago, that he would pass out and fall hard. Thank heavens he was right next to the truck, he hit that first. I don't it doesn't sound like a good thing but when the other option is face first on asphalt,,, yea I'm glad the truck was there.

He quickly came to and the first words out of his mouth were, "I don't know where I am". He looked up at me and said "honey, I'm ok. I have to get my legs out from under me". Ok at least he knew who I was and he knew Kenzie. We laid him down on the asphalt and let him rest for a bit.

I told him, we are here in town, lets get you looked at. He fought me on it, but lets face it, I usually get my way. So we go to the instacare here in town and they won't even look at him. We are told he has to go to the ER. Even if he was only out for no more that 30 seconds. So we go to the ER. We pull up and a nurse comes running out with a wheelchair, and I think the instacare has called,, nope, we just pulled up right in front of the door and she was there. She heard he passed out and ran him back, by the time I got back there they were doing another EKG, blood panel and other tests. After about an hour and a half we get word that his kidneys have gone from a 2.7 to a 4.1. NOT GOOD!!!!! He's very dehydrated, which is why he passed out. He hasn't been able to keep much of anything down. And that has caused his kidneys to "crash" even more.

So now we are here until the drs get his fluids up and can figure out why he isn't keeping food down.

Dr. Goodger has already been in and said it isn't like last time, they just need to find out why. So that's the good news. We should know more tomorrow morning.


At least we were in St. George when it happened.

Swelling down pics

Ok here are the pictures of his feet when the swelling was about half down when we were in the hospital and now.

weight loss and Valentines day

It truly amazes me what we do to our bodies and all we put ourselves through on a daily basis. When Todd went into the hospital, a month ago, they weighed him and he weighted 270 lbs.  I knew he had put on weight, he knew he had put on weight, and we both knew it was a lot of weight.  It didn't bother me, he weighed 370 when we got married, but I was concerned about his health.  Enter Heart disease and kidney failure.  Sigh!  We have both been diligent in watching our sodium and potassium intake.  Ya never know how creative one can be in the kitchen until you HAVE to be.  He stepped on the scale yesterday morning, he has to weigh himself every day to make sure his body is NOT retaining more fluid, and hit an all time low,,  219 lbs! WHAT???  OK I would say about 85% of that is fluid FINALLY leaving his body, and the other 15 is my mad cooking skills!  BUT STILL, that is the smallest he has been our entire married life.  He is withering away.  So today, my to do list consists of calling the dr and making sure he wants Todd to continue to take the diuretic.   His feet look amazing, I will post a pic today when I get home from work, if I remember.  Aside from the dizziness he constantly feels, he is moving around so much better.  I still worry about him constantly when I am at work. I think I always will.  it helps that Jake gets out of school by 1 pm so he is home if his dad needs him.

This man (Todd, not Jake) IS my valentine.  There are not enough words in the English language to express how much I love him. And I would go through this 10 times over if it meant I got to spend eternity with him.  He is my world, my love, my life.  He keeps me strong, and supports anything I want to do.  It is my hope that our girls find someone just like their dad, whose life goal is to make his wife happy.  

I love you baby.  

bitter sweet

Ok this post is about another man in my life.. One I have had an 18 year relationship with.  He has comforted me, frustrated me, made me laugh, and cry, and brought me so much joy, words can do no justice.  18 years ago I was blessed with a beautiful baby boy.  It has been such a blessing having him in my life.  Watching him grow from a baby, to a toddler, to an child, to a *gasp* teen, and now ,legally, an adult has been an adventure I would gladly do all over again.  He is such an amazing young adult.  Happy birthday to "my little man"  may you have the best day ever!!!  Thank you for choosing me to be your mom!

Dr's Follow up visit

We had our follow up visit yesterday with both our family dr and the kidney specialist.  The family dr went well, he did another blood panel and told us to just keep doing what we are doing and come back in 6 weeks,, (WHEW we have time to save some money for gas now!)

 The Kidney specialist went well also, considering.  He is still worried about the swelling, which has gone down drastically, and needs to continue to go down. Dr Leon, (the kidney dr) finally gave us a name for what we are going through.  Renal Cardiovascular Disease, which leads to kidney failure, which we are full steam ahead on that one, and heart failure.  By getting rid of the excess fluid we are treating the heart but killing the kidneys, so a transplant is inevitable in no later than 3 years, to get on the list that is and start dialysis.

Dr L had us see his nutritionist because Todd is VERY anemic, which also explains his desire/need to sleep almost all the live long day, and his protein is dangerously low.  So we,, YES WE, are on a strict diet.  I prefer to call it a lifestyle change.  NO more than 1500 mg of sodium a day.  I challenge you to look at your food labels and read exactly how much sodium is in the food you are eating,, it's kinda gross.  Just in my yoplait light that I had for breakfast there is 80 mg.  Todd can only have certain veggies, tons of red meat,, yay for him, his favorite food, and chicken.  We are doing this together because, well, there is strength in numbers.  We aren't allowed dairy, cheese, corn, and a bunch of other stuff that is common every day foods, I really have to look over all the info the nutritionist gave us yesterday.  (yes I know I ate a yogurt for breakfast, Im not throwing them out!)

While we are in with the nutritionist, Dr L had a nurse come take a small sample of blood to run for iron and protein levels and came back asking what insurance we had,  (YAY MACY"S)  Unfortunately, our insurance does not cover a shot he needs, when I asked how much the shot was I dang near fell off my chair,, (no Jen, I don't remember what it was! a hormone of some sort to get his protein levels up I believe) $800 for ONE SHOT!  So we are upping the anti on his protein, he is taking liquid protein and filling up on egg whites and meat.

On that note,  Dr L left us saying come back in 2 months, and try to up our insurance (it's already taking half my paycheck every week :-/)

All I can say is anyone out there reading this who has diabetes and thinks, 'pft, I'm fine, nothing will happen, oh please it's all just a scare tactic' PLEASE PLEASE PLEASE look after yourself,, keep your blood sugars under control, watch your diet.  It can and it WILL happen to you, and this is NOT something I would wish on my worst enemy!! (if I had one)

So I am off to work leaving Todd alone for the first time in two week, and there is a huge pit in my stomach.
Keep us in your prayers please.  <3

and we're home!

Our first night home!  Felt like heaven to sleep in our own bed, next to each other.
I'm trying my best to keep him on the same routine that we were on in the hospital, meaning sleeping and eating schedule,otherwise he would sleep all day because of his lack of energy.

So I did the good wife thing and got him up by 8, made him breakfast, had him weigh himself and take his blood sugars, (the bs he is super good about doing on his own)  The jerk has lost 20 pounds in like 5 days!! ok ok I use the term Jerk loosely.  I truly dont think he's a jerk! *wink*

Our follow up appts with both the regular dr and the kidney specialist is scheduled for monday jan 28th, I will keep you all posted!

Kiss your family, let them know they are your world!

Our investment.

My brother is buying a house. Great investment. Here's our little investment!!!

We made it home safe and sound. Now to get into a routine!!

Day 5

Both our regular family dr and the kidney dr have been in to say good bye and LISTEN TO YOUR WIFE! Ok they didnt use those words but we all know I'm a control freak and will do everything they tell us to.
They just took his blood pressure for a last time 111/65!!!! YAY!!!!
We have a pharmacy we are taking home with us and I will have to read up on all these meds so I know what's what. Todd is showered, dressed and we are waiting for the nutritionist then we are homeward bound!!

A huge thank you to all the drs, hospital staff, and all of you for your thoughts and prayers. We will continue to keep you updated on how things are going. We aren't out of the woods. Dr mercado told us its not if he needs a transplant it's when. So that's the direction we are heading, once we get the fluid off his heart.

Please feel free to come by and see us once we get home tonight. I'm hoping to go back to work Wednesday once Todd is settled in.

Drs updates.

Kenzie and I slipped down to the cafeteria for lunch after waiting all morning for the drs to come in,,, yep they come in while we are gone. So here is the update according to Todd.

They are discharging him tomorrow!!!! GLORY DAY!!!!!

Because I wasn't here I don't know all the details. I'm hoping the drs come back tonight. If not I'll have my list of questions for them before we leave tomorrow.

I will post more details as they come. I'm just thrilled that he gets to come home tomorrow. Thank you to everyone for all the prayers and fasting.

This pic is from last night. These two girls sure love their daddy. And have been such a help for me. I appreciate everything they have done for us. Our little angels.

The morning after

Woke up this morning to Todd standing over me stroking my cheek. He is feeling so much better than last night.

They have taken out the iv so we are done with lasix drip and now the drainage of excess fluid will just continue on. I can see that swelling in his legs and feet has dropped drastically. So that's good news

His blood sugars were a little low this morning , 55. So he had a good breakfast of an egg omelette with cheese, yogurt, grapes, peaches, and toast. Oh and orange juice. You would of thought it was candy the way he sipped at it with a big grin on his face. Lol

He got in the shower this morning so he's all clean for visitors!! And now we are just sitting here watching Mary poppins until he takes the remote from me.

Have a fantastic Sunday everyone !

He just can't be trusted!

So when I left the hospital yesterday, the last thing Todd said to me was,,,, "I'll be fine I promise!" LIAR LIAR PANTS ON FIRE!!!!!
A couple hours ago I got a call from our daughter Ashalee saying that 'dads tongue feels really weird and he can't talk properly, they're taking him for a ct scan I'll let you know as soon as I do'. I immediately think he's had a stroke and start panicking, called my bestie, who is in slc with her brother that had a brain tumor removed on Thursday, to tell me what the symptoms of a stroke were. She works in the medical field and is used to my questions, thank heavens.
Bottom line, it wasn't a stroke, it was an allergic reaction to his anti nausea meds. I am back in st George because, well he lied. I'm camped here until he goes home.

A big huge thank you to ash who was in the right place at the right time!! And to our family in Henderson who seem to be jumping at the chance to help us. We love you so very much!

Just got off the phone with my mahn!! (ya gotta say it a little southern)  The dr came in this morning, we are still waiting on the ECG results.  Todd is really tired so while I'm down here I'm trying not to call and get updates every 5 minutes, and let him rest.  I'll let y'all know if anything new comes today.

Jake had his eagle project this morning and had about 20 people show up to help us clean and grade level books.  It went fantastically well, thanks to all those who came and helped out!!!

Starting out with a bang!

This is how the Johnson's do it!

For those of you who don't know Todd has diabetes, has had it for about 18-20 years,, hasn't always looked after himself properly because let's face it, who wants to prick themselves 3-4+ times a day with a needle?

He went to see a dr here in Nevada for a torn tendon or something about 18 months ago, and was prescribed prednazone, a steroid, to help with the swelling and achiness in his leg.  Wal-mart pharmacy, being the high class pharmacy they are, made a huge mistake on his prescription bottle, instead of writing on the bottle, 20 mg, two times a day, they wrote, 40 mg two times a day.  It was about 4 days before we caught this mistake, so yes he was doubling the amount of prednizone he was taking.

Long story short, this prednizone sped up his diabetes about 15 years. (it really didn't help that he didn't take care of himself the way he should of, but 15 YEARS?, I'm now married to a 65 yr old man! GREAT TIMES!!)

He went in for a check up with his dr in st george just after this and he confirmed that the prednazone sped up the diabetes and we needed to get his blood sugars under control and the swelling down in his legs.  He went for another check up about 6-7 months ago, and was told that he had developed an enlarged heart, and the swelling in his legs had gotten worse.  He became very diligent in testing his blood sugars 3-4 times a day, taking his insulin 4 times a day and cut out all sugars and most carbs. (We all like carbs!so this was a hard one!)  I was so proud of him, his blood sugars were under control and regular finally, but the swelling in his legs hadn't gone down and they hurt so much, he struggled to get in and out of the car and by the end of the night his legs were painfully large. At this time the dr did a blood panel and the results showed that his kidneys were at a 1.5, which is the danger line for diabetics.  So we became more diligent in his diet and his insulin. The dr was happy with his blood sugars so we knew we were doing something right.

A week and a half ago he went back to get checked out for a cough that was floating around our house, and they did another blood panel, this time his kidneys were at 1.7,, starting to get worried at this point, the dr asked him to come back again, that brings us to Thursday, Jan 17, 2013,,,,,

After another blood panel, his kidneys were at a 2.2,, time to go to the hospital,, NOW.  Which puts us at my (rhonda's) recent facebook status'.  They have done a ECG, EKG, Sonogram of his kidneys, xray of his heart.  The dr, sent in a cardio vascular specialist because his heart has enlarged even more.

We are still waiting for the results of the ECG which we should get tomorrow, Saturday morning if the dr is on time.

Here is where we stand....

Kidneys are failing rapidly,
Todd is in Heart failure.
The Kidney specialist says he can fix the heart but it will kill the kidneys, *tears and scary thoughts here*
If he looks after himself with diet, exercise, weight monitoring, and maintaining his blood sugars and blood pressure he will be able to get a kidney and a pancreas transplant!  (a broken pancreas is what causes diabetes, so this would fix that!)

For now, he is in the hospital to get the excess fluid out of his body that his kidneys are failing to help dispose of. The dr's have him on a very limited fluid intake, no\low carbs, diet.  They are, in the dr's words, trying to put a bandaid on the kidneys so they can then get that bandaid to stick and fix the heart, then remove the bandaid and replace the kidneys within two years, if they last that long.

Our goal, get him home, active, and as healthy as we can so he will be able to get the transplants.  We are waiting to see if the heart can be fixed and how/what we need to do that.

I will keep you updated as often as I can.  Sadly I had to come home tonight to be here for our boys for a few days, I will be on the phone with Todd when the dr comes in with the results of the ECG and will update shortly after that.  I am heading back to St George on Sunday to be with Todd until he can come home, which we are hoping, and the dr's say at the earliest, will be Tuesday.

Please keep him in your prayers.  Thank you all so much for all your love and support.  You have no idea how much it means to both of us to have so many wonderful friends and family members surrounding us at this time.

WELCOME 2013!!!!!!