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Consistant

Chris has been at my grandma's house now for 3 weeks. It's been easier and harder than I have expected. Easier by how nice it is to finally be able to talk with him, kiss him, lay with him without having nurses come in every 20 minutes with meds, blood draws or the random check ups. It is harder in the sense that my mind has fully shifted to caretaker. It's a hard pill to swallow to be so young and taking care of a sick person. I am not complaining in any sense, but it is difficult to be here in this situation when 2 months ago we were growing our lives together.

He is consistent in dialysis, meetings, counselinf, and many other activities that make us busier than when we both had jobs! It is a constant comfort to know that we have support to help us when we have no money coming in. Chris is stable, and that is all that I can hope for. We have a transplant meeting on June 2nd to see if what we are working on will get him on the list sooner. The doctors do not have a lot of hope and it feels that we are left by the wayside a lot of time and need to be our own advocates. Thank God I can be mean on the phone....

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He is home! Living life happy, windows were open today enjoying the fresh air💙 so happy to have this time to be with him 💜💚

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Waiting

Why is it that there is no reason for us to be in the hospital, yet the doctors are keeping us there.

We were told he was going to be released on Wednesday (today) yet they have had the worst communication from.any hospital that I have seen. It's aggravating to know that there is nothing else they can do for him, and all he wants is to go home and we cant. They keep telling us "tomorrow", but how realistic or trustworthy is that tomorrow? We are ready after 6 weeks to be in a home and cook a meal and Netflix binge with our puppies 😑😔😑.

Hopefully we will have more answers tomorrow.

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Wednesday

The doctors are discharging him on wednesday. I am in back in Michigan tonight and tomorrow figuring out how to put our life into these small and insignificant cardboard boxes. What do I take from our life together, what do I throw out, memories all wash up like waves in my mind with each piece of jewelry, clothing, nick-nack that I touch. I believe these next couple days are going to be the most difficult for me yet.

Am I strong enough to be the caretaker of the relationship, do I have it in me to take care of my deteriorating husband? Of course I do. I have so much strength that I didn't know I possessed. I would do anything for him because he would do anything for me, i love him so much as want to make him the most happy. Only a couple days till he gets to be with his dogs and be "normal" again, and that is as good as we are going to get.

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So long

It's been so long since I posted I feel like. There is not a ton of changes in terms of Chris. He is continuing dialysis Monday, Wednesday and Friday's. His levels improve when he gets the dialysis but go back up the next day. At least dialysis is keeping him consitant.

He is crying more often about what we both know is to come in the next month or two. Doctors are not hopeful and conintually tell us not to get our hopes up but that is all we can cling to.

I think I am running low on fuel mentally and physically. He has been so confused moreso lately than before and it causes me to feel anger, saddness, frustration towards him from what he says or accuses me of doing. I know that he is not thinking right and hears things due to the ammonia build up fro. His organs not working, but it does not calm the pain that I feel when he says stuff.

Everyday is a struggle, it's realizing that we are drifting farther and farther away from our old life and closer and closer to a life where I may have to start over again. It's scary to even think that. This weekend I am going to be packing up the house and moving out. 6 weeks is too long to not live at home and be in limbo. Back home to Ohio we go.

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Helpless

I walked into our floor at the Cleveland clinic to find my husband not in his normal room. I panicked, yelling asking where my husband was and why I was not informed of where he was. They moved chris to a room with 24 hour nurses watching him due to his dillusions that he is having from the liver and kidneys not working.

Did I mention that this is day 3 of dialysis?

Anyway, I got to see my husband and he didn't recognize who I was. His memories are not very accurate and that is difficult to see happen to anyone nevertheless my husband.

I have been so frustrated with the back and forth answers and miscommunication between nurses, doctors and I. I had everyone go into a conference room and I asked them to give me facts. I didn't like what I heard.

The doctors really have no other option but dialysis. Dialysis MAY extend his life till 2-3 months if we are lucky and everything goes to plan. They told me without dialysis he would last 6 days tops. It was all up to Chris if he wanted to continue doing dialysis. So I asked him myself, in a quiet room with just us.

Chris has options, nursing home, or my grandma's house. He wanted to do my grandma's house where there is water and woods and our dogs can be by his side. My grandma's house is about 2 hours away from the Cleveland clinic where he will b3 doing dialysis for 3x a week. This is the closest option for him. It is still in the plans to do the mlve after we get him through the infection (3 more days) and this rash that has popped up on his skin. Hopefully soon, he can be in a more normal environment where he feels more like a man and less helpless.

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Sinking

I walk down these hospital halls seeing so many faces, differing degrees of emotions, all these faces, tears, sharing one common thing. I can't help but wonder if that women or man getting their coffee fix for the day are in the same predicament that I am. How can someone who is walking through hoards of people feel so alone.

I research constantly. Treatments, remedies, cures, symptoms, mental health, financial, medical issues that I am going through and all I see as my list to-do list grows my loneliness widens. I am having issues today with realizing that it is now week 5, and he is not getting better. A Catheter for Dialysis is scheduled for tomorrow. That means that we may get out, but the doctors are wanting him to stay in Ohio. How do I move my life in Michigan here when I don't know where I will be staying, working and for how long. Chris and I built a life in Ionia, and I am realizing every night as I talk to God, that I may never get to live in that quaint little house with the rambunctious dogs and my doting husband again. That scares me. I am getting so jealous of all of the photos of people celebrating with their families Easter, enjoying the day carefree. Its silly to think that I want even a bad day back with Chris, in our normal lives together. 

I am lost. In a sea of uncertainty for my life, his, my future and anything and everything that falls in those cracks and crevices. Part of me wants to run home to my mom and cry and ask “why did God do this? Why is he challenging me and Chris?” another part of me is strong enough to continue making lists, researching, praying, waking up and being strong enough to take care of my fading husband in a hospital. That second part of me is quickly becoming tired. 

I just want my husband back instead of this shell of the man I married.

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How do I love thee?

Today I received a painting that was so beautoful, and reminded me of Christopher's and I'd relationship and love. It was the thing that I needed the most at the perfect moment. Love is a crazy thing. I cannot believe how much love and adoration I have foe him and him for me. I can tell his body eases and he is more relaxed when I am near him, even when he is sleeping he seems to sense me and relax. Love is strong, it's something that many want and few find. Ours took some trust, patience, time and a lot of miles on the odometer, but here we are, another story to tell and add to our book.

I often wonder why this situation happened right in the beginning of our relationship and not 30 years down the line. I wonder how a relationship can go through such rough times and seem to get stronger. I wonder how lack of sleep, coffee, family time and showers can make someone resilient.

Found out today that his kidneys are getting worse. I guess I got too excited for them to start working. He has another fever and an infection again. How can a body take so much and still carry on. I have to believe it's God. Hoping for better days ahead.

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Everyday is New

Chris is getting stronger, more alert, goofy, and overall more and more like the man I married everyday.

The doctors are shocked by how suddenly the kidneys decided to start working better and better eberyday. They state it was because the infection cleared up and that's why the kidneys want to work, however I know in my heart that it is due to the constant prayers from all of you.

I am so humbled that my husband is coming back to me little by little everyday. I am so elated that the idea of getting him back home gets closer and closer to becoming a reality.

Chris and I stay up later and later every night reminiscing and laughing about our life story together and how we got here at this moment. He loves to bring up the first time he met me and knew that I was the one, as well as our trips that we have taken togehter. He loves brining up our two furbabies and talking about how blessed we are to have family to take care of our other half of our family. He is talking about how this entire situation has completely altered the way he is going to do things in life and be differently. A more caring hisband, giving, obedient and kind. Laughing, I think the same things that I want to change.

We by no means want to state that he is going to live. He still has an extremely limited chance of living past 2-3months without a liver, but those months we will be striving and working towards a whole liver transplant. I think everyone deserves second chances, I believe that more now than ever.

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Kidney levels are lowering, infection gone, this is my hero. Hands down.

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Chris

Seeing friends from my past puts into perspective my life with Chris. I met with “the Katies” for Dinner and ice-cream today from my Art therapy days and It was shocking to hear where they are in their lives versus where I am at. These amazing girls are doing jobs within their field and seem not only confident but completely and utter bliss to be doing it. It is weird to tell my story to these girls and it seem so “lifetime” perfect. Chris and I met, fell in love, got engaged and married on a beach with margaritas and tacos, we live in a beautiful little house and have two perfect dogs that are so loved. Perfect right? Amazing how time changes things in 2 years. Time changes things in 2 weeks. 

Time has and forever will be changed between Chris and I. We will have to be out of jobs for some time, going to dialysis possibly 3x a week, possibly looking for other employment, pills the rest of his life, scars. How much can a relationship take? How much can a human body take? How much can my husband take?

Chris is the strongest present that I know. He is always willing to put people before himself, brushing even important tasks off to asset someone else. He is a compassionate husband, son, brother-in-law as well as an amazing dad to our two fur babies. He is the most hilarious person that I have met and always is agreeable and kind. He is THE BEST THING THAT HAS HAPPENED TO ME. Everyday I look at him and even though he is thinner, yellowed skin, weak-bodied, and tired, he is the strongest person that I know. I know that he is able to overcome this terrible dark cloud that has encompassed our life for the past month, but I sit in this chair looking at my handsome husband and think, would I be able to last or push as long as he has? All of the shots that he has to take alone per day is terrifying. All of the knocks on the hospital door for nurses, attendants, doctors, cleaners, food service staff both him for and wake him up is enough to drive me nuts. Walking to the bathroom or sitting in a shower and lifting in arms above his head to wash his hair is a task all on his own. Chris is and will always be the strongest person that I know and have the pleasure to have married and known.

UPDATE FOR THE DAY:

the Dr’s are stating that his kidneys levels are going down (today mind you, this always changes). They are going down enough that hopefully if they trend that way, he would not have to do dialysis. Also his infection that had set in his body form the biopsy is showing to have gone away (we will know for sure tomorrow). This overall is promising, however I still have doubts in my head of if he is going to make it all the way to get a new liver when he is so fragile. Sometimes all I can think about is dark thoughts....

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Dialysis Debachel

Chris had many visitors this weekend and we both are pooped out! It takes it's toll with so little rest, sleeping in a new hospital room sleeping in a chair for 4 weeks now and seeing visitors for hours on end.

Today marked the beginning of the 4th week that we have been in the hospital. It's surreal to think that our lives completely changed one month ago.

Today the Drs are stating that the only thing to do is 1. Hospice (knew this from our previous hospital) or 2. POSSIBLY dialysis. Now this is not a guarantee by any means, and he still is months away from a liver, but kidney dialysis would be able to eliminate some of his fluid that is taking up his feet and belly and causi ng him to not eat as well as hopefully prolong his life enough to get him a liver.

Tomorrow is a tap into his stomach to get some of that fluid out and possibly some shananagans in the wheelchair to get him feeling like a human.

Also, if all goes well and he wants to do dialysis, then we will only be in the hospital for 1-2 more weeks!

P.S. please do not bother or blow up his facebook with"do dialysis!" I want him to want to do it without added pressures. He is already been through so much that the added pressure would not be good.

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This man and I are so blessed to have family around us in this time of need. Thank you family and friends who stopped by today and saw him and took me away from the hospital for some much needed food! It was a blessing to see everyone and we are both hopeful for next week. The Drs are wanting to put him on dialysis for his kidneys in the HOPE that he can last long enough for a liver transplant. That HOPE is all we are clinging too! More updates tomorrow as always ❤

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Hi I am so sad for what you all are going thru and wondering if a liver transplant at this time can save him and if so, how to go about seeing if we match? I am Randy's wife from work and I want to do anything I can to help.

Hello,

so with his liver showing no regeneration, they need to have a whole liver. A liver transplant for him is 3 months away due to him drinking. I am so grateful that you are trying to assist in anyway possible! Thank you for the idea!

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More Air

He is giving up, I can feel it. I know that being poked and prodded all the time and having bad news on top of bad news is never a good thing for anyone to hear, nevertheless 3 weeks worth of it. I understand all of that, yet, it is difficult for me to see him sleeping more, not eating anything and looking dazed and confused.

Today the kidney team informed me that dialysis is in the discussion to help in some way. I asked “why bother if the liver is dead and not regenerating?” They said “to try to prolong his life as long as we can.” Chris did not like that answer, he said no to dialysis. As his wife, I need to agree with what he decides even though everyone around me is wanting him to try and to live. I want him to be comfortable and relaxed as much as possible. 

He is frequently having panic attacks with the claustrophobia of not breathing as well as he is used to, having his stomach so big from the fluid in his belly slowly choking him and his lungs deflating. “Its a terrible way to go” he tells me in-between breaths.

I want his pain to go away, I want it all to stop. God is here with us, but not doing anything or answering anyone’s prayers.

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The Flood

I am surprised everyday of how strong I am. I am learning  things that anyone could not normally handle, I am numb to, or I am being nice, listening, attentive, and passive with people. I knew in my head that my being cordial, and letting issues, people, circumstances drift over me would halt someday, and the damn would break and a flood of emotions would ensue. 

Today was a flood.

I got so upset and aggravated today from the nurses and staff coming in every 30 minutes,miscommunication with family members wanting to see Chris when I know he needs his sleep, transplant specialists letting us know the slim chance of him ever getting a liver, to the infection that is setting in his system due to the biopsy. I HAD ENOUGH. I needed to leave the situation for one night and let his family and friends come see him without me worrying if he is eating or drinking or too tired from all the visitors that continuously show up for support.

I am a type A personality, and when plans change,  I get stressed out. I know that visitors with colds, or dirty hands can get him so sick that he could die quicker and I want to just not have anyone see him and cocoon him all to myself. That would be the selfish thing to do. I wanted to yell and scream and blame Chris for why we are in this situation in the first place, but that would be immature. I want to tell everyone to leave him alone, but they want to see him just as much as I do. These are the things that are impossible to work around in a new family with all of his friends and family relying on this “new face” in their lives with Chris. It is so difficult dealing with this situation this new to our relationship and knowing how to phrase small visits with family and friends when they barely know me to begin with. I know how much Chris means to all of them, because I was fortunate enough to marry him, I know how amazing, funny, optimistic, and goofy he is. 

I keep getting worried that every hour that I am away from him, that is one hour I will be regretting if he leaves me for good. Seeing my best friend suffer like this is the worst thing that I have ever gone through, and then adding all the stresses on top of that, I am surprised I held in my anger and anxiety this long...

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Ocean

Today, the doctors gave him a 10% chance of living past 2 weeks. I know that God is on our side and I have faith that he has a plan. This plan may not be what we want as a couple, me as a wife, or him as a husband but we trust that God has a plan.

He took a shower this afternoon, and all I could do was sit in the bathroom blaring Hillsong’s Ocean crying and singing along to these lyrics: 

Your grace abounds in deepest waters Your sovereign hand Will be my guide Where feet may fail and fear surrounds me You've never failed and You won't start now

I am so lost when it comes to this. I am not suppose to be in the hospital for the 3rd week in a row, having doctors stating that they are running out of options, having my strong, independent, caring, godly husband suffer in this room shivering, vomiting, not being able to stand without help. We as a couple should not be talking about some very difficult options that we should be considering in the very near future. 

This is all so wrong, I am upset and saddened for everyone’s families and friends that are affected by this. I want to cry and ask God “what did he do to deserve this? How are you not seeing your child hurting and asking for help to relieve this? Why are you just not responding?” God is here with us constantly. I can feel him with us when I start to become overwhelmed with paperwork, responsibilities, decisions that I need to start considering for my future, and  he is with Chris in his time of need. 

He is here, but I wish he would start helping us out, giving us some positivity in a sea of dread.