It is Always a New Day

When a person has a stroke I have concluded that the days are really not the same filled with the same order of events or actions even though that is a certain truth. Each day is different and new because they are still with you. Each day for me is filled with joy because I have a daily reminder that there is a God and he loves me very much.

A new day because I am daily amazed, amused, loved, loving and tired (tired just means it was a full day). Recently it is new because there is a world wide situation with a virus. Immediately my husband falls into the category of a compromised immune system. He depends on me to know what to do. We cut our trip visiting grand kids short, we immediately sheltered in our home. We only went out for a doctor appointment and to grab fresh food. The ramifications of him or I contracting this virus would be dire. I was not panicked, I was not full of anxiety. I immediately thanked God for all the ways we were prepared. Our general good health. A supply of toilet paper! I already was a work from home person.

My husband and I watch the news for a short time in the morning and the evening. He would look at me and say “are you worried?” I respond “No, are you” I get that crooked grin and he said “Not if you aren’t” Is that Love or what? It really is a powerful thing.

I have had a lot of time to look at things, I started to get frustrated with laundry. Every shirt of my husbands is inside out. In the midst of my frustration I remembered they are inside out because of his partial paralysis on his right side making it a struggle to even take a shirt off. I realize as I look at the pile there were many nights I did not help him. The struggle is ok because it is good for him.

I have had time to paint in an artistic way which has long been a love of mine. He of course works out everyday. He is one of the only people who have lost weight while being quarantined !

Now that he is home everyday, he will come into my office and tell me “I love you”, or says “you are beautiful” or “you are smart”. Everyday he tells me Thank you for lunch and it is delicious. He always wants to be the best Scott he can possibly be. He wants to be strong and he wants to be healthy. He wants to be a good husband and Dad. He wants to be a good man. He prays everyday. He enters each day with anticipation and joy that is amazing. His sense of humor is endless and truly funny.

There are reminders of what has happened but they usually bring right behind them a reminder of how far he has come and what he has accomplished.

What a blessing.

Falling In Love Again

When the stroke happened all of my thoughts and significant prayer was to be thankful and hope for life. Once my husband was out of the woods so to speak the prayer was even more thankful and the hope was for recovery. Once recovery was sufficient to return home the prayer was thankful and the daily reminder was how great God loved me to save my husband.

There was profound change in my husband, the once fiercely independent marine, father, husband, brother and son was now changed. He was changed physically, mentally and emotionally. Now he was dependent. He cannot remember things, he often gets confused, he cannot drive. Some days he needs help with everything and other days he does not. He needs help shaving every morning. He cannot cook or use the washer and dryer. Those simple mechanical things that he used to do without thinking he can no longer perform.

There are more doctors to see on a more frequent basis. More labs, more tests, more documentation and records. More forms to fill out!

Emotions are harder to control or exhibit appropriately. This is often exhausting to him. There are things that make him tired easier. There are more frustrations, more disappointments.

To fall in love again after almost 30 years is an amazing experience. It also does not mean I fell out of love at any time. I fell in love with the different Scott, the one who was transformed by the stroke. This person who fights everyday to heal, who has never given up. The man who has transformed his 69 year old body into a fit, muscular, fighting machine. The man who still loves sweets and is still diabetic but now chooses not to eat certain things. The man who eats an amazing palate of vegetables. Who works on his speech therapy daily. The man who is sweet, who loves me (this has not changed). The man who reads daily and is excited when he can read more, and more words. The man who dances to music from commercials and sings with me.

The man who now wants to be more social, who waves and says hello to everyone in the neighborhood.

He wants to be the best husband he can, he still opens the doors for me. Seats me at our own kitchen table. Now he is figuring out my medicine container and helping me remember to take my vitamins in the morning.

He does most of the housekeeping while I work, he moves furniture and sweeps every corner. We laugh if he forgets and leaves a pile of dirt somewhere. He dries while I wash the dishes because he sometimes forgets to use soap. The washer and dryer confounds him but that is ok because I like doing laundry.

He remembers more and more and he knows the way to places when we are driving and helps me navigate the traffic. He loves his work outs whether at the gym or home. We have him set up with everything he needs. I even found a great bench that folds up and fits in a corner. He is successful when he works out and it makes him feel like the man he used to be. He is aware of the differences.

He loves fiercely , he lives fiercely, he strives for healing fiercely.

I have fallen in love all over again with my Marine, my husband,the father of my children, my stroke survivor.

My son and his father

I am dedicating this blog to my son Jacob. If I did not have Jacob exactly like he is his dad would have never gotten all the care he needed. Jacob has permanent brain damage caused by lesions on his brain. He is one of the smartest people I know with a heart of gold and a deep relationship with God. I am not writing this to slam or shame his brothers. All of my blogs have been truthful and the truth is his brothers have really taken no part in their Dad’s recovery.

Jacobs dedication since the day of the stroke when he was riding in the car with his Dad while he was having the stroke has been unwavering. Jacob suffers from anxiety which can lead to seizures. He kept his head called me and put me on speaker phone where I actually yelled at my husband to pull over. Once that happened Jake hung up and called 911, he rode in the ambulance, showed the EMT’s the picture on his phone with his Dad’s medication lists. He never panicked, he did not have a seizure just took care of his Dad. I thank God for him continually.

When his Dad was in the hospital he stayed with a friend because he had never spent the night alone. He came everyday to the hospital. He got rides with friends and learned how to Uber which he had never done before. He was scared, devastated and emotional but when he was in the room with his Dad he talked to him, prayed for him, listened carefully to the doctors and asked very good questions. He would often stand outside his Dad’s room and cry, but he was there everyday. During this time he took care of his cat, cleaned the house grabbed the mail and brought me clothes comfortable clothes he knew exactly what to bring. He continued his Special Olympics responsibilities.

When I thanked him for everything he said “Mom, Dad is not just my Dad he is my best friend.” It showed. He sat with his Dad while I took work calls. When his Dad transitioned to Rehab he came with me I sat in the cafe and worked he went to all his therapies and learned how to transfer and help his Dad once he came home.

Scott came home in a wheelchair and we still laugh today about the first few showers where we flooded the bathroom and it took all of us to complete.

He has practiced his speech therapy with him. He schedules all of their rides to and from the gym and sometimes to the movies together, he changed where he gets his haircut so he goes with his Dad scheduling and the rides. He knows how to give him his insulin and he does not like needles.

He has withstood the good and bad, the changes in his Dad and the emotions that are sometimes not pleasant and directed at him. His love endures, he is special. He may live with us because it is out of necessity for him but he loves it and us and our life together. He is a miracle from the non-verbal little boy we adopted that no one thought could ever achieve anything. He is a champion and I hope one day his brothers will thank him for lovingly taking care of their Dad. There is so much more to him but this is what I am saying for now.

Famous trip to Hollywood during the Special Olympics World Games before the stroke.
Scott and Jake during therapy session learning to walk
Ushering at Church while still in the wheelchair

Roadblocks in the Brain

I often watch Scotty and think about the way his brain works now and try to come up with different ways to help him continue on his journey of healing. The easiest way to describe it is there are now roadblocks in his brain that stop those connections from happening. They stop the right word coming out , they stop him know his shoe from his sock, or the right size trash bag for the different trash cans. Things like forks, knives, spoons are very evasive.

These road blocks do not mean his intelligence is lost and certainly not his quick sense of humor. The brain has to learn new pathways to the information that is already there and I am trying to learn how to help him. It is not easy because somethings work for a day and not the next day.

Thank goodness for the color coded calendar although it can be friend or foe. It is good because it helps him to know what is going on each day because he cannot remember, it is a foe when he looks at it 82 times a day! It is a friend when the gym is on the calendar he looks forward to it very much.

Other times when talking his brain repeats the last word he hears or if the radio or TV is on in the background a word sticks in his brain and derails whatever conversation is going on. One of the hardest things for me is I understand him most of the time, but need make him repeat words correctly because this is part of the healing. It is hard to do and seems demeaning to him at times but he does not feel demeaned it is solely my feeling. I have to constantly remember that this is what helps reroute the brain around those roadblocks. Sticking with it not giving up our son and I spent 15 minutes trying to figure what we thought was a question …it was he had forgotten what he ate for lunch and wanted to know. Relief and laughter when we go it right no matter how long it took.

Another aspect of roadblocks is sometimes they are scary. The emotions can be all over the map with stroke brain and the person really as little to no control over them. This is where we rely on love and our faith in God to bring us through it in one piece.

Forgetting is another piece of the puzzle. Forgetting your underwear is on, forgetting what you ate for lunch, forgetting where your socks are and they are on your feet. I have to just go on and help correct or find not silently go into a terrifying thought it is another stroke or something else happening. So I make him look directly at me and smile big to make sure there is no sagging or other signs.

The upside is we have found music always helps it has helped from the beginning. We sing songs with short easy refrains and dance together or he dances for me. It is real, it is helpful and we are going to keep going. There is no alternative and we don’t won’t want one.

Tears and Being Thankful

Time passes slowly and swift as the second hand on a clock. We are at 2 years and 2 months since the stroke that nearly took my husbands life…but did not. I have had a dream of standing at the pier at the end of our street and crying so much that I raised the ocean level. How silly is that? But I have had the dream often lately.

One of the things the stroke took away was thinking our life was small. I was never envious of others but more in awe of the trips people took and the fantastic restaurants they seemed to eat in and the beautiful houses. I thought man that is pretty good living. I thought I lived a boring life, but happy. Thinking others would believe it a small life without much adventure. The stroke removed all of those thoughts and replaced them with daily reminders of a big life.

Often it feels like there are countless things I want that the stroke took away and then I think of the things the stroke gave me that I feel guilty on both counts. The stroke took away certain freedoms we all enjoyed. My husbands ability to drive and go places with our sons. That is a big one he feels less of a man because he cannot drive and he cannot drive because it would not be safe. He cannot take care of my best friends autistic son by himself. This was one great joy and purpose he wanted to do until he was too old. He use to tell me that all the time.

He always loved music and when he was in the hospital I laid my phone near his ear and played everything from Gospel to his favorite Bob Dylan. When he was wheel chair bound and fidgety from the stroke and the drugs. We listened to music all the time. I sang to him in a totally horrible out of tune voice…I mean I would get stoned at a Karaoke bar with all drunks that is how bad my of a singing voice. He liked it. Now when music comes on whether a song, a commercial or even just a sound bite he starts dancing, sometimes just with his hands, sometimes sitting down, sometimes dancing across the floor. I mean every time it is so amazing.

I made him cry at Christmas because we usually do not buy each other anything and I bought him a couple items to add to his growing pile of home exercise equipment. He loved them but cried saying he wanted to get me a present but kept forgetting what it was…this breaks my heart. I question myself how did I not realize and just give him the stuff before Christmas. I will try to learn to know the stroke brain more.

What do I miss? His voice was very mellow and soothing, now it is deeper and kind of gruff. This is from the trachea tube and the vent. His inability to speak correctly I want to know everything he has to say! I especially want to understand him when he prays it is emotional and heartfelt and sometimes I do not understand what he is saying but God knows and that is all.

I miss the quickness of his mind, his ability to make such good decisions. He was the best rudder my wobbly ship could ever have and now I am without it. He knew how to do so much and I realize I know how to do so little.

He doesn’t remember to turn his toothbrush on but he does remember to brush his teeth. He cannot drive and give me a break but he wants too. He wants to be whole. He just doesn’t realize how whole he is today. I try to get him to believe me that the stroke did take things away but left us here together.

Sometimes I lay in bed and hear that scuffing shuffle and think what is that noise and then I remember it is him his walk is different since the stroke. Sometimes when I first awake and he says “Good Morning” so clearly I almost forget, until I need to shave his face and help him with his socks and underwear.

I just keep saying he is here and I am so thankful to not have an empty side of my bed , and have to look at an empty chair. I am thankful when he calls me Mama, and I am thankful for every good shave I give him with no nicks. I am thankful to be there to remind him what day of the week it is and I am thankful to see the anticipation and joy on his face when he knows he is going to the gym. I am thankful for the laughter we share together. I am thankful for when he hugs me. I am thankful to rewash the dishes when he forgets to use soap. I am thankful when he can put his shoes on and tie them himself. I am thankful when he shows off his biceps and tells me look at the muscles on my legs.

How could I not be thankful. I am not alone. I have the love of my life still by my side. I have a constant reminder that God saves, heals and loves us. I am thankful for the big and the small. I am thankful that I know how to appreciate life more than ever. So I look to tomorrow and think of the things that I know without a doubt.

Christmas with Stroke Brain

One of the things I always thought was wonderful with our special needs son was the continuing boundless joy and excitement during Christmas. The excitement, anticipation, curiosity, and the chatter all of it. Well there are similarities with the stroke brain and the intellectual disability. There is definitely some child like features. I am going to only focus on those that are good.

We decided to decorate for Christmas early, part of it was me having just recently returned from the 5 week long trip in which my step daughter passed away. I like Christmas colors, I love celebrating the birth of Christ and giving. This year unlike last year my husband seems more aware of what is going on . This all makes sense his brain is in the slow process of healing but it is healing. When I suggested we decorate early right before Thanksgiving it was met with enthusiasm.

We got the house decorated the inside of the house. We have 2 trees because we decorate our main living area and our Florida room. We have lots of pillow covers , bed set, bathroom items including a shower curtain just for Christmas. Every year we all year we put money into a Christmas account and in November we get the cash and begin to buy presents. This is always fun and carefree because there is a set amount we know it and we are free to spend it until it is gone. The last 2 years I have really had to do all that planning but that is ok.

We finally got to the outside of the house. We decorate the front of the house with lights and we have one of those small flag holders and the flag for Christmas is Santa with a Train.

We got the lights all set and the first night my husband was in and out of the house 5-6 times. Why? He was going outside to look at the lights. He loved them, so much joy from some $2.99 set of lights. We have a remote for them but need a battery so every night he goes out right before dark and turns them on, then he stands outside looking at them. He goes first thing in the morning and turns them off. Same thing with the Christmas trees.

He often asks me to sit in the Florida room where we have many pillows, a small tree and the fireplace decorated. He told me “I like sitting next to you” No greater compliment have I ever been paid.

We live in a small community where we zip around on our golf carts. One night we went for a drive and Scotty asked me to drive so he could look better at the lights. He stopped me many times to point at lights. I think he loved them all! He described them using wrong words but with a smile that never left his face.

He has watched Christmas movies with me willingly! He says he wants to buy me something ( we do not usually do this) but he doesn’t know what or how to do it! Then he smiles and tells me he will one day. Yes he will.

No matter how tired, how mundane, how sad or anything else it can be there is no way to not be thankful that he is still in this life with me and can enjoy so much. I am thankful, grateful and daily reminded of God’s love.

Dad & Daughter

I have been away from writing again for a bit. You see my step daughter (only using step as to not confuse people) had become quite ill and was battling cancer. She and I had been planning a big family get away. Hoping to secure a big house and invite her mother and we all would hang out for a week on the beach. We had fun discussing and sharing links to different locations and VBRO houses.

But this blog is not about me! It is about Lettie Ann and her Dad and how the stroke brain processes in my husbands case the worse scenario possible and that is the pending death of a child. They had a tumultuous relationship and often were distant from each other in miles and emotion. But there was love undeniable between them. When together the similarities in features, character, and even food that was liked and disliked often made us all laugh.

He walked her down the aisle just a few years ago to both of their delight and before the stroke. During the recovery of the stroke she was so distraught she traveled to Florida during Thanksgiving holiday with all the kids just to see him for herself. He doesn’t remember it but she never forgot it. We talked/texted daily during the entire time. She wanted to know everything! During this time we formulated the plan to save money for the monstrous week on the beach or somewhere, big enough space for everyone to have their own place and she and I would cook!

At some point during the planning she became ill, she would tell me often that she knew it was something bad. This was the first cancer diagnosis and I had to tell her dad. We went to see her before her treatment started and he sat by her bed or door waiting for the moments when she was able to talk and get up for a visit. Despicable cancer, after recovering from cervical cancer she became sick again. Eventually she wanted to go home.

There was a time where she and her dad were in the hospital at the same time. I was in constant communication with her mother who was her care giver and biggest champion. We were texting….the same message..don’t tell Scotty how bad she is , she doesn’t want him to know yet. I was saying don’t tell her how bad her dad is she doesn’t need the worry. His surgery had complications which led to a transfusion and kidney’s starting to fail. To this day he has no idea how bad it was, but during this time Lettie decided to go home with Hospice, no more treatment. She made the decision bravely and wisely it was her decision. She let me know when to tell her dad.

I couldn’t say it without crying and I wasn’t sure if the Stroke-brain allowed him to understand what I was saying and grasp the finality of the situation. But 2 days later while laying in bed he looked at me and said I think Lettie is going to be with the angels…is that right? I told him that was right. He silently cried and then rolled over. Heart break is an incredible pain. Even more so when a stroke has softened emotions and a persons heart making them so tender.

We began making trips to Alabama to see his daughter. One day when we had returned home he said to me, I want to be with her when she passes I hope you and her Mom can work that out for me. His speech was clear and passionate. I began to seek God and ask him to grant this request for my husband. I also told Lettie’s mother.

Another aspect of this life changing event was the friendship between mother and step mother, wife and ex-wife. We bonded together and became real friends. There was one thing in mind to make sure Lettie was taken care of in the best possible way.

Then we received a phone call and we were urged to come right away. I told my husband we must pack and leave. Cannot plan it just go. We ended up staying for a month.

There were funny, sad little episodes in the hotel as being away can cause confusion. Mostly he was fantastic and spent hour after hour sitting by his daughters side. We all worked together to ensure all her needs were met, meanwhile also taking care of Scott, the house, family, friends and the grand kids. The bond between the 3 of us grew and being around his ex-wife and her siblings actually help his memory and was good that came out of the situation.

His daughter was amazing, I have to say her strength at the end of her life was something you read about in books or see in movies. Dying she comforted her parents, told her Dad several times everything would be all right. Made sure her mother knew that she was taking wonderful care of her and was excellent in everything she did. She called me in one day and told me I was a fantastic wife and mother. Her kids knew she loved them and would be taken care of.

The biggest gift she gave her Mom, Dad, and me was to tell us she was right with the Lord and was not bitter or angry and knew her kids would be fine.

My husband, her father got to spend time with her, her large family, and the grand kids. He ran the gamut of emotions from making us all laugh to crying and wondering how it could be this way.

In the end she passed away peacefully with her mom on one side and her dad on the other. The Lord granted us the desire of our hearts to be with her. We made it thru the funeral. Now we are planning how to continue, the kids are doing well everyone is trying to live without her.

What was gained was a glimpse at the strength of the human body and soul and how love can over come literally everything. We all bonded together and her family welcomed us in as if we had always been there, we have future together of visiting and celebrating each other successes mourning the failures.

My husband with a stroke brain, was a compasionate man who dearly loved his daughter and cared about her mother’s well being. He often worried about his speech and would he be understood. She always understood him and when the rest of us didn’t we laughed until we could figure things out.

Although today I am not always sure how he is coping, I do know what he believes and what he knows because he told us. ” I am glad she is no longer suffering and is in heaven because that means I will see her again one day.”

I will be sorry and grateful, sorry it took her illness to bring us all together and grateful that she did it.

I often wonder….

I sometimes wonder why I am writing this blog. I know there are family members and friends who read it to catch up on this journey. I don’t know everyone who is reading it. I sometimes wonder why am I doing this what is the real point of writing the blog. I have dreamed of being a writer and publishing a book but have never really acted on it. I found myself often overwhelmed with all the information that comes when someone has a stroke with lasting medical and physical damage.

I honestly started writing to get the information out of my head and to those who cared about Scotty. Then I wrote to clear my head of the thoughts and things that happened. Now I am not sure.

I am feeling sad and upset today. It is because of the stroke and the fact that my husband really cannot drive yet. It would not be safe or responsible to allow it. He brings it up from time to time and it happened today. He accused me of purposely keeping him from driving. He believes he can drive. This is the stroke brain. His right lower quadrant of vision is effected which impacts peripheral vision. His reflexes are slow and clumsy. He cannot remember walking across the street and getting our neighbors mail as they are out of town. He lastly cannot communicate clearly but thinks he is perfectly capable of driving.

Why am I sad and upset because he doesn’t understand how much it bothers me that he thinks I am doing something deliberate that hurts him or makes him feel less than the wonderful strong man he is. I long for the days of 2 drivers and 2 cars and the freedom for all of us that comes with it. It would mean he was doing all the things he should be able to do during his years of retirement. It would mean so many things are back to normal and right.

The truth is I believe in his complete healing, I have take great joy in the growth in his speech and so many clear sentences and thoughts are coming. What a wonderful sign!

I cannot deny the thought he may never drive again. I hang on to the many other wonderful things. Healthy heart, kidneys back to normal and off the chronic disease status. The joy he has and a child the anticipation when we go to the gym. The wonder of the things he does remember like when the trash is picked up and what day of the week we are in.

Lastly him knowing he hurt my feelings and saying to me , “I hurt you and I am sorry.” But the deep feeling he has of not being a good man , husband, friend or father because he sometimes thinks of himself as not whole. All because of an engine, 4 wheels and a tank of gas.

It really isn’t true. I try to tell him but he often just pats me on the shoulder and smiles. Truth his son Ubers him to get his hair cut. They use care ride to go to the mall or the gym. I take him to all doctor appointments and have to do all the explaining to the doctors and nurses. When I need something quick from the store it has to wait until I get done working, every errand is done by me. This is not lost on him, instead it impacts him.

This is the worst of the stroke. It is the worst of it all. If he thinks less of himself. I cannot stop it from happening and I don’t know how to fix it. So we must walk in faith and belief that in God’s will we stay.

Deep Conversations can Still Happen

Thankfully although they are very different, we can still have deep meaningful conversations and we laugh just as much or more than before the stroke. The play and the laughing are the best especially when we can laugh at ourselves.  We both do silly ridiculous things and even when we get mad it is a flash in pan and both of us are instantly sorry and contrite.  Life is very short, and life changes swiftly all those old adages are true.

It is really true if you look out side of your own circumstances there is someone somewhere whose grief is deeper, whose sadness is larger, and whose pain is greater.  I know we are that to someone and others are that example to us. 

We strive to be a light though, never give up, don’t let the lows get to low so you cannot be lifted up again.  We often talk about our faith and how would we do anything without it.

We spend more time than ever together, I schedule, eye, dentist, doctor, most appointments at the same time to save driving time off work etc.  For some it would be too much and I am not saying I don’t crave some time alone and really don’t get much of it.  I am planning on cherishing every moment. 

During my husband’s recent hospital stay it was hard to bear being away long enough to shower but for everyone’s sake I did it.  Someday hospitals will have facilities for family members.  I hope I never need to see that day!  We ate every meal together in the hospital I tried to make it normal.  I ordered a tray we sat together across from each as we ate, looked at the menu together, brushed our teeth together ha ha we never got sick of each other isn’t that a miracle!

We take walks, go to the pool, see a movie, try to still have a date night here and there.  It cannot become caregiver and patient.  You lose something it happened to us where I felt suddenly like a single mom with 2 children or a 24 hr./7 day a week nurse.  That is not what our relationship is about and retaining the love of husband and wife instead of caregiver and patient is a goal that is fluid and worked on every day.

We were on our way to a lab appointment he was getting his creatinine levels checked and me my cholesterol as I am on a journey to better health.  We laughed as we went to the wrong lab and then ran out and drove across the street to the right one.  We were sitting waiting and he said “You drive crazy, I like it and watching you drive” First of all hysterical and second he said it very clearly. 

The other conversation was when he said “ I don’t know how and why you do all that you do”  I thought about it for a few minutes and my response was -#1 God gives me the strength, #2 I love you and would do anything for you.  #3 We have to live life to the fullest and if that means shaving your face and making sure you are well then that is the life I am living and love.

The Hospital and Surgery after a Stroke Pt. 2

Picking up where I left off in the hospital it was a whirlwind and at the same time everything seemed to take forever. Scotty’s blood pressure dropped very low and stayed that way. He slept all the time, his hemoglobin was very low , and the kidney’s became impacted. All of it left him with no energy.

The decision was made to give him a unit of blood and the kidney specialist was called in. All the while and thankfully he had no idea how seriously ill he had become. It is very strange, because he never lost his appetite and when he was awake which was never very long he was alert. I had to remind myself, keep thanking God because this is not going well.

The Kidney specialist explain his creatinine level kept creeping up and they were doing labs everyday to keep tabs on everything everything. His hemoglobin stabilized and the kidneys kept trending in the wrong direction. His baseline is .6 and they climbed to 11.2. The doctor on the weekend did not really make any decisions just explained what was happening. He just kept saying “Dr B is going to get excited when he sees Scotty’s labs” I had no idea who Dr B was but asked around and he seemed to be adored by all the staff and told us no worries he would take really good care of my husband. I couldn’t wait to meet him.

What happened was he started healing from the surgery but his kidneys were doing very poorly. So temporary dialysis was ordered. This means a port is put in your neck, more paperwork and then you do a partial dialysis to get your body used to it. I went with him to sign the releases and then was kicked out.

I went back to his room and waited, and waited and waited. Isn’t waiting for anything one of the most exhausting things in life but waiting in the hospital oh boy takes the cake for sure! I finally went out and ask the nurse if should could tell when he was taken into dialysis it was late go figure, but a least I knew what was going on.

Finally he is back and I took one look at him and knew something was really wrong! I ran out and asked the nurse do they give you drugs on dialysis and she said no, then looked and said they gave him a benadryl because he got anxious. Well it should have been in his chart because benadryl has the opposite effect on him. I said well he is out of his mind in there and hallucinating. She rushed in, took his vitals called the ICU nurse on duty they started running thru the preliminary stroke tests. I keep saying it is the benadryl he should never be given benadryl. I never thought there would be a reason to give it to him.

Hallucinations and the stroke brain are really a terrible combination. Expressive aphasia during hallucinations is quite terrifying. It took forever for the drug to leave his system because of the kidney function. He thought the IV stand was a strange man and the picture on the wall was 2 women. The nurse told me thank goodness you were here because we would have had to take him to ICU and do more tests. This is why people think I am nuts but if he is in the hospital I don’t even like being gone long enough to shower. It is not because I think he won’t get good care, he had wonderful care. It is for my piece of mind and my ability to understand him and what he needs.

Thankfully 2 more dialysis treatments and we were done and soon on our way home…well after 13 days. I was literally begging every doctor to send us home!