April has been full of great happenings…

Hello TEAM!!! Happy April to you all…

So far the month has been filled with great and exciting things happing for the Holmes family…

Happy 40th Birthday to my world, my one and only… Steve!

Steve turned 40 on the 21st! We had a wonderful celebration over the weekend. We got 1/2 bushel of beautiful blue swimmers, that were steamed to a beautiful red color then sprinkled with yummy old bay seasoning. We had corn on the cob, steamed shrimp, and ice cold beer. The next night we Grilled steak with veggie kabobs and introduced Chris to Hopkins dairy ice cream…YUMM.  The most important thing was we had good times, laughs and made many memories. On Monday night had a wonderful dinner with two of our closest friends and added more laughs, and good times was had by all.

man and woman standing side by side
Happy Birthday to my love
bushel basket with lid
ymmmm.. this is filled with cooked crabs for Steve’s 40th Birthday!
Steve showing off his Birthday crabs…

 

 

 

 

 

 

 

 

 

 

man in red shirt eating a crab claw, smiling
Chris enjoying his crabs on Steves 40th Birthday Celebration

Another grand celebration this month is we got a visit from Chris. He has spent several days with us, prior to heading up north for work.  We have traveled all over DE and MD for the past few days. Lots of smiles, laughs, good times and memories. From Thrashers at the beach to yummy crab cakes MD style to hot steamed crabs and beer. He has been able to spend lots of time with nana and mom that has been great. We missed having his beautiful wife Lisa with him this trip. She makes our family complete!

 

If you know much of anything about me, you know that my brother is not only my biggest supporter but my hero! I do not know where I would be without him or his guidance. I do my best to make him proud each day. We are on opposite ends of this great country but I know that with a moment’s notice, he will move heaven and earth to be here if I need him.

 

Now, in true Cheryle fashion… I have saved the best news for last… see what good little things you get if you read to the end of my post….

 

picture of graduation announcement, picture of girl in cap and gown
Mischief Managed!! I am finally GRADUATING!


First, I am officially announcing my GRADUATION from AACC.

On May 25, 2017, I will walk across the stage and receive my Associates Arts Degree from Anne Arundel Community College. As you know, my dream is to become an RN, sometimes our dreams have to be put on hold so we can full fill our destiny. This is not the degree that I wanted when I started, but I earned it. I dedicated the past 5 plus years to my education, and I will take this degree with a smile knowing that hard work, determination, and dedication made it possible. I am very proud of myself for bing able to check this box off.

 

university seal
BS Public Health

My other news, that some of you have been patiently waiting for…I am proud to announce that I have been officially accepted to a Bachelors of Science program at American Public University in West Virginia. I will be pursuing my BS in Public Health. I start classes at the university in July.

Now, I know what some of you are thinking… “she wanted to be a Nurse?” Yes, I did and YES I DO. Once I earn my BS Public Health I will be able to apply to a BS Nursing program. I will have taken nursing classes so I will have that under my belt. Once I have my BS Public Health and my BS Nursing and my Masters degree. I will be able to pursue my dream of becoming an educator in the healthcare field.

The universe threw me a curve ball, so hit it and have to go where it goes. I will not give up my dream or my goals it will just take me longer than I planned. I will be taking a full course load each term. I know the commitment that I am signed up for and I know that I will be able to do it. I’ll just have to remember the 3 D’s: Destination, Determination, and Deliberation….oh wait that’s how you Apparate. Well, I feel that the same things apply to school.  “one must be completely determined to reach one’s destination, and move without haste but with deliberation.” according to  Wilkie Twycross, Ministry of Magic the official Apparition Instructor.

I’ll just have to remember the 3 D’s: Destination, Determination, and Deliberation….oh wait that’s how you Apparate. Well, I feel that the same things apply to school.  “one must be completely determined to reach one’s destination, and move without haste but with deliberation.” according to  Wilkie Twycross, Ministry of Magic the official Apparition Instructor.

The biggest thing now is coming up with the funds to pay for the next step in my educational journey. I will do what I can, and make it happen somehow…

 

I have been slacking a little bit on blogging, for that I am sorry. I have had several things in the works and working very hard on them. I am very busy at work, climbing the clinical, balancing life, career, family and self. The balance is nothing new, it’s just a new balance.

Well, my friends, for now, that is all… I will leave you with all of this goodness.

Don’t forget to leave comments in the guestbook, let me know you have stopped in to say hello!

 

 

How can I care for him, when I can’t care for myself?

I worked on this post a few weeks ago. I did not get a chance to post it. Some of the things I write about are painful. Not only to me but to the ones I love. I have been asked, “How do I what I do?” I do it because I Love him. 

As I sit in bed and I work on finishing “Steve’s story…” I hear the sound that for me is one of the scariest sounds in the world… 

Earlier in the evening, Steve had come into my room, I could tell something was wrong with him. He was getting me water, and any little thing that I would or would not need. I asked him again, this time giving him my “I know you’re not telling me the truth, so spill it…” or I like to say “THE LOOK”. Finally, he told me that he was not feeling well. His stomach was bothering him, and he did not want to throw up. I knew that he was not feeling well at dinner, but I let it slide a bit to give him some room. One thing I have learned with Steve and his disability is that he needs just a little time to figure things out on his own. It was now a few hours later, and he was still not feeling good. I asked if he was starting a cycle, and he nodded. We talked about what that means, and what to do. I knew he would throw up, and then feel better, but the next few days would be long for him. We talked about food plans for tomorrow, what he was allowed to eat, and what he could not. We have this pretty much down to a science and knew exactly what to do. 

It’s about 120 a.m. I was working on my blog, reliving some scary and heartbreaking times in our life last year when Steve was sick. That’s when I heard him coughing, then I heard the noise, the sound that is made when you pour water from a bucket into a toilet. Well, that is the sound that is made when steve is projectile vomiting, and not breathing.  What could I do? How could I help? Vomit does not bother me anymore. I would normally make sure that he does not pass out, or hurt himself by falling. I would normally help him get cleaned up, rub his back, help him get his toothbrush, and mouthwash… When this happens to him his tricks are super, super bad. 

This time, all I could get myself together, that takes a few minutes, get out of bed, and get my crutches, and carefully hop to the bathroom. I can not rush, I can not move quick, I can not even really do what I used to be able to do.

I know that one day I will be healed and I will be able to do what I do best. It’s just the waiting…

Steve’s Story Part II

Here is the rest of his story…  I have included the entire story that starts on January 28, 2015, that is the end of the other post… The part of the story that is on the other post is in GREEN. The rest of the Story picks up in BLACK

I will also remind you that this is Steve’s story, he has given permission to share it with you. Some details have been removed out of respect for Steve. The events that you are about to read about took place from January 28 — February 25, 2015.  All of the things that I went through, Steve went through, and we went through together. During this time in our lives, I want to Thank my work family, my parents Susan and Jerry, my brother and his beautiful wife, Chris and Lisa, our friends and his family.

To All of the Nurses and staff that helped to care for Steve during this time. I learned a lot, and will never forget all that you did to save his life. 

 

Last January 28, 2015

I received a phone call from him; he was having a medical crisis and needed me. When I arrived to help him, I was unsure if he had had a stroke or what was going on.

He was not able to hear anything, he was screaming to talk to me. He had total left sided weakness, he was swollen, and was begging for water, drinking 5-10 bottles of water in about 2-3 minuets. I could not get a blood pressure on him, and his pulse was weak and thready. I listened to his lungs and I could not get clear sounds, they were very diminished on both sides; I did a quick neurological assessment on him, and decided he needed to go to the hospital NOW. I pulled him up from the chair and had him lean on my back and we walked to my car. I drove him to the hospital; instinct told me if we waited to call 911, he would have died. I knew something was very wrong. We got checked in to the emergency room, the only way I could calm him down was to look directly at him. I would have him focus on me, and I would ‘mime’ out what I was asking him, to get him to tell the nurses what was wrong with him. That is when I felt the goose egg lump on the back of his head. I asked him if he fell, and he did not remember. The nurses were unable to get a blood pressure, or a pulse to register on the machine. His oxygen was registering in the 70’s…we were rushed strait back. The nurse we got, was absolutely amazing! She immediately got the doctor in to assess Steve’s condition. I was able to remain calm, and quickly went over all of his medications and his neurological conditions. Blood work, x-rays, CT scans, Lung scans he was put through a battery of tests. I went with him for each thing. He was very scared, and each time people would talk to him he would look to me. One he could not hear anything but “the ocean waves in his ears” as he said, so I would say, “look at me”, I would use my fingers to point, my eyes then his; then I would say “its OK” and give thumbs up. He would then give thumbs up, and he would be able to do what ever needed to be done.

Each time we retuned to the room, they would draw more blood work on him. They had hung fluids, he was severely dehydrated, his breathing was getting worse, he was on high liters of oxygen. His nurse was doing neurological checks on him every 15-20 minuets. The last bit of blood work they had done, the doctor came in and said that he was going to be admitted to the heart and vascular floor that he was in acute renal failure, and his heart enzymes were not good. He was going to send him for one last nuclear lung scan, then he would be moved to the floor. This is when Steve started to turn for the worst. Steve is claustrophobic, and also being sick and scared, I of course was going with him for the scan. The staff was glad to have me to keep him clam. As the scan was being done, it was to a point where the machine would come very close to his face. I was standing at his side holding his left arm up for him, since he could not. I told him (yelling in his ears…) that it would be ok and it was almost done. When I looked at him, I knew something was wrong. He was gone; I had seen that look in his eyes before… “GET HIM OUT OF THIS MACHINE, NOW!” I yelled to the staff, they came running in. We (yes, we because I helped them) moved him to the stretcher and I wheeled him back to his ED room with the help of the staff. I called for his nurse, “something is wrong with Steve! Come in here!!” I said he has had a neurological change, look at him… She performed the check on him, and looked at me. She was able to get him to blink, and she said to him, “Do you know your name?” he nodded, and yelled “Steve” then she said “do you know who I am?” he said “nurse” then she said “do you know who she is? ( and pointed to me)” he looked at me, then at her, “that is my wife” I walked up to the side of the bed, so he could see me better. She asked him again, “Steve, what is her name?” Steve looked at me, and his eyes filled with tears, then he looked at his nurse and yelled, “She is my wife, the love of my life” “Do you know her name?” she asked one last time. This time my eyes were filled with tears. “No”, was his answer as he looked at me, so scared and tears running down his face. His nurse then called the doctor in to the room, and more staff came with him. He was put on a bipap machine to help him breath, while they did took blood culture’s to see if he had an infection in his blood. I know now that his body was going in to septic shock. The doctor looked at me and said “Mrs. Holmes, we are going right now to Critical Care Unit, on the 3rd floor, your husband is very sick we need to go now.” My world, the love of my life, was wheeled out of the room. His nurse looked at me and said, “I’m going with him, I will not leave him”

I was numb, I walked out to the waiting room to his waiting friends and family. It was about 6 p.m. we arrived at the hospital at 9am. The entire day was a blur to me. I went over as many details as I could, updating everyone on what I could tell them.

We arrived to the 3rd floor, I knew that the staff needed about 30 – 45 minuets to get him settled in and hooked up to monitors. It was almost 2-3 hours later that a nurse finally came out and called for “Holmes”. I jumped up, grabbed my mom’s hand and said “everyone stay, here please”. I wanted her to go with me, since she could fill in any blanks I would miss. We followed his nurse to his room, as I came around the corner, the nurse said, “I’ll get the doctor to speak with you.” As she rushed down the hall, I turned to his room. I could see several staff members still in the room, working on him; I knew this was not correct. They had enough time to get him cleaned up and hooked to monitors. I looked at my mom and said “Oh, god…I thought they had intubated him, I don’t think I could take that…” the words had not completely finished leaving my mouth when a staffer ran by with a ventilator and someone yelled, “get the doctor now, he need to be intubated.” I grabbed the wall and almost passed out, a hand grabbed me and lead me back to the waiting room, a doctor will be out to speak with you. I walked out, everyone in the waiting room, all looked up at me, some stood…I walked forward, and simply fell to my hands and knees on the floor, I crumpled into the smallest ball I could get into and started to sob. You could hear a pin drop on the floor everyone simply froze. They all waited for me, to get myself together. I was able to move to a seated position on the floor. I told them all what had just happened. What felt like, hours later when a nurse came out, “Holmes” This time, it was my mom who took my hand, and guided me through the door following the nurse to a little room. My brain kicked in, and I remembered back to the last time we were here, “you must be calm or they will ask you to leave” We stood in a little room, the Doctor and a NP came into speak with us. I was asked, “What started all of this? Why did you come to the hospital?” I started without thinking, and told our story, giving all the details and symptoms that I could to help figure out what was wrong with him. Then because I was so used to it, I told him of his neurological issues, the brain damage and went through that whole run down. The doctor was a bit impressed, that I could give such details and I could basically read his medical chart out of my head. I explained about the brain damage, and the fact that he cannot have any more episodes of lack of oxygen, I knew his blood gas numbers from the ER, and his carbon dioxide was very high, and his oxygen was low. I did not want him to suffer anymore brain damage. The doctor finally, looked at me and said “STOP” I was a bit shocked and now annoyed, I was giving him useful information and he did not understand. Then the doctor told me what was happening. During transport from the emergency room to the floor Steve went unresponsive, even to pain stimuli. The nurse that came to get me, the first time, came too soon. They needed to intubate him to save his life. “My main concern right now, is to keep your husband alive for the next 30 minuets, then to keep him alive for the next hour.” “Then every hour we can keep him alive, that will be a miracle” I stood in absolute shock, stick still, not breathing, blinking or anything. “Your husband is in multi organ failure right now, he is severely dehydrated and is septic” My job is to keep him alive, and to figure out where the infection is” I did not know what to say, other than…“ok” I asked if I could see him, and they said yes. I then asked, “Can I stay with him? I know the rules, Ill be calm and out of the way. I can’t leave him.” I knew it was normally against policy. The doctor looked at me, and said, “I’ll let the nursing staff know, you may stay”

I went to his room, held his hand my mind flashing back to May 19, 2013, we were just down the hall about 3-4 rooms away. I kissed his forehead and told him I loved him. I went to the waiting room, to update our family and friends that had gathered. It was still a two-person visitor policy, I made it very clear, I would not be leaving his side once I went back into his room. So, one at a time could visit. I again reviewed the rules, on keeping calm and if you cant control your emotions then you can’t visit.” Everyone nodded in agreement. I was hugged, and many words of love, support were given.

That started the first night of my watch. Steve was burning up with fever, so bad he was burning through his sedation. I was able to assist the nursing staff and keep him a bit calm in between sedation bottle changes. I had it down to a science, as the medication would start to wear off, and the nurses would change to a new bottle or the tubing was changed. I would stand at the head of his bed, and slightly turn his head just a fraction of an inch so if and when he would open his eyes he would look right at me. I would stand on the opposite side of the nurse, so she could do everything she needed to do, and Steve could focus on me. I knew that I had about 1-2 minuets that he would wake from his sedation, I would lean close to him and tell him several things, as calmly as I could…while holding his hand, looking right into his eye’s I would say “Your ok; you’re in the hospital, you are very sick; You have a tube helping you to breath; I am here, I am not leaving you, I love you.” He would look at me, with fear in his eyes, then comprehension, then a slight squeeze of my hand, and he would be out again. It broke my heart each time, this process happened. For the next 3 days 24 hours a day, every one to two hours this process would play out. He was being treated for severe pneumonia and an unknown infection.

The doctor told me that even though we saw Steve lying in the bed, not quite relaxed, but not looking like he was in pain or suffering. The inside of his body was at war with itself. What we could not see was that his body was burning with fever; his white blood cells were working overtime, trying to combat the infection. His lungs were struggling to inflate and deflate, even with the aid of the machine. The sedation was allowing Steve to be in a dream-like a state, so he did not know what was happening. The antibiotics were sent in like the swat team. Over the course of the three days his body, and gone from acute renal failure, multi-organ failure, 3rd spacing fluid (accumulation of fluids in the so-called 3rd space…the interstitial space between the skin and fascia) and total shutdown to turning the corner and his body started going back to homeostasis.

During the day and night, the nursing staff would come in doing vital checks, medication, assessments basically of head to toe. All of his tubes and wires would be checked. I would do what I could to either help or stay of the way. Always offering, in any way to assist them. Nighttime, the nursing staff would come in as a group, and lift, wash, change his linen, reposition him. I would watch in the beginning, learning but after a few times, I was right there helping, lifting, washing, pulling on sheets. Dayshift, he would be lifted and have a change of position. My favorite dayshift nurse would always, lift his legs, and move his feet, doing a few exercises with them. She would say “keeps his muscles moving, people forget about that..” After a while, I would start to do the same. The nurse would often look at me, and smile, and say “thank you”. Most of them knew that I was a nursing student, so I would always pay such attention when they were doing things to Steve. I was learning everything I could; I was supposed to be in my 3rd term. I may not be learning in a classroom, but I was learning real life.

I don’t exactly remember what night it was 3 or 5, but I knew that I had not properly showered in a few days. My work family, had been great with making sure that I had food, and was taking care of myself on days that my parents could not come to the hospital. It was one of theses offers that I could come over to take a real shower, and get cleaned up that I got the best advice I could have ever had. Steve’s mom and my mom had come to the hospital and agreed to sit with Steve while I walked over to my unit in the other building. If anything changed then they would call me right away and he would never be left alone at my request. I grabbed my book bag, and walked to my building. As I entered my unit, I was trying to be as quiet as possible, not wanting to interrupt the flow of the day, or interfere with patient care. As my work family saw me, I got hugs, pats on the back, and words of much needed encouragement. They knew that I was near the end of my emotional rope, and barely holding on. It was our Sr. Director that I ran into that gave me the best words of advise. She wanted to know what was happening with Steve. We went into a private room to talk. I started at the beginning, until the current day. I did a lot of crying, and filled her in on school telling her all the details and reasons why I had to withdraw from half the term, and would be returning in March. This meant that I would not graduate when I was suppose to, and I was feeling guilty that the day Steve went to the hospital, I was suppose to be in school. If had been in clinical that day, then I would not know until the end of the day, and what if he had died, I would not have been there to be with him…as I spoke the words the tears flowed down my face, uncontrollably. I admitted to her; I had decided not to return to school. I did not think  that it was for me, and I could stay a tech have more time to be with and care for Steve. I was also worried about work, missing time, and what it was doing to the unit, leaving it short staffed… I never forget what she told me. She looked at me, square in my eyes and said “first, it is my job to worry about the unit, so you can take that off your mind; your job will be here when you come back to work.”  “Second, this is simply a bump in the road, like a speed bump. You would get through this, and soon enough it will be a memory, you will learn from this and it will make you a better person, and nurse.” “You are going to graduate, and be an incredible nurse, just a little later than you expected”  She could see and feel the love that Steve and I shared. She gave me a hug that basically, felt like she had put my entire life back together and glued the fragile bits of me that were starting to fall off, back together. I don’t even know if that makes sense, but over the few days before this, the sleepless nights sitting in the ccu (critical care unit) looking at Steve lay in the bed, my mind had been doing nothing but thinking. The major thing that it was thinking was about quitting school, I had not shared that with anyone until this point. Now, that I had I had been put back together, emotionally, physically (after taking a shower), mentally. I still had my future, I still had nursing, and I was going to be a great nurse. I decided, I was going back to school and nothing was going to stop me.

One of the things, only a person who has been intubated more than once can tell you, one of the worst feelings is having a tube down your throat, you being very aware of what is happening, and that tube being pulled out. One of the things that Steve and I have talked about over the years, and what I know to be his biggest fears is being intubated, waking from a drug inducted coma, the feeling of the unknown; not knowing person, place, or time and not being able to communicate or breathe on your own. One thing I did not discuss in the ‘May 19’ experience was the extubation process, and the long-term psychological effects it has had on Steve. Now, I know what you’re thinking, “I’ve had surgery before, I barely remember…” When you have surgery, especially elective surgery, you have ‘signed up’ so to speak, so you know it is all part of the process. Well, when you have to have the tube placed due to a medical emergency, your throat will suffer’s trauma; this is normal. At this point in his life, he has been intubated twice due to a medical emergency life or death. Both Steve and I were hopeful that it would be the last time, how wrong we were.  When Steve was intubated this last time,  his throat suffered minor trauma. After the tubes were removed, standard assessments were done, he had one major problem: he was unable to swallow.  Swallow evaluations, swallow study, education, the ladies that came several times a day to work with Steve were amazing.  This was the second time in his adult life, he was learning how to eat again. 

Once he was transferred, to a regular floor he finally got the physical therapy he needed that he did not get in May ’13. The short time that he was unresponsive, and the additional lack of oxygen he suffered a set back neurologically; little more brain death. Over the past 2 years, he and I worked very hard on his balance issues. Monitoring his falls, and working on how to prevent them, and what to do when he did fall, to prevent injury. I had done everything that I could do, to help him. This time his balance was affected even more than before. He was unable to stand without leaning to one side or walk without falling. He was fitted with a walker, and what a difference it made. I cried with joy the first time I watched him walk with the walker, no longer being off balance, no longer bumping into walls. It was the first time since his brain injury; I was not standing just behind him, ready to catch him. That was a good day for us.  We were given exercises to do at home; the doctors and staff knew we could not pay for outpatient physical therapy.  He also, was able to finally get his CPAP machine to wear at night to give him oxygen while he slept. Finally things were falling into place. Things had finally started to look like we were on the path to full recovery.

Steve spent 9 days in the hospital. We spend 5 days in the critical care unit, 3 days on the medical surgical floor and 1 full day in the emergency room. The day we were discharged, I was super happy, I had my Steve up and walking (with a walker), breathing on his own, and most importantly alive. He would be going to stay with my parents, so he could have 24/7 care while I was at work. I would be going back for my pediatric rotation in March, and I would be graduating in a year. I finally felt like, we were going to be able to start our life…

 Sunday, February 15, 2015

If I have learned one thing in life, it’s not to speak too soon. We were out of the hospital for 9 days. It was my first full weekend back to work; we had dinner as a family that evening before work. Steve was looking a little pale, but with everything he had been through I did not think anything of it. It was a Sunday night; I was a work, and again received a call that made my heart sink to my feet. It was my mom, something was wrong with Steve; they were packing up and driving to Anne Arundel Medical Center. He was unable to breath, severe shortness of breath, and had horrible pain with every time he tried to inhale. I went and spoke with my charge nurse, and gave report of my patients. I told them, that if I can come back I will, maybe it will not be serious. When I got down to the waiting room of the ER he had already been taken to the back. I took one look at him, and almost passed out. He was grey in color, soaking wet, blue lips and was trying to pull every bit of the oxygen that was blowing in through his facemask. I noticed, he was on 10 pm, and his 02 sat’s were in the low 80’s… All I could think was…Oh Not AGAIN!! I wanted to scream. I wanted to cry, I wanted to simply put my arms around him and hold him, heal him if I could. It was not long before we were taken back to a private room. I ran through the last few weeks with the doctor that came in, and information on his brain injury. I rattled off his information like I was reading from a chart in front of me. They rushed Steve off for a CT scan. When he came back a regular bed was delivered to the room, at that time I knew we were being admitted again. The doctor, who had been treating him, during his last visit, came in. She took one look at us, and said “what happened?” I gave her the updates; he was making progress with my parents, eating well, he was healing, or so we thought. It was not long before we were rushed up to a room on the medical surgical floor. We were placed right at the nurses’ station, and we had two nurses; the charge nurse and one other nurse. This at first stuck me as odd, but I let it pass through my brain without thinking of it again. I should have listened to my instincts.

We spend a few sleepless days and nights, seeing everyday his condition get worse. His health was deteriorating right before my eyes. We decided not tell anyone; family, friends, not a soul other than my parents, my brother (in California) and those who were on shift the night I left, that we were in the hospital again and just how sick he was. This was mostly Steve’s choice, I was doing as he wished. My instinct told me that he did not want people to see him like this. As each passing hour went, I could see Steve getting sicker and sicker. We saw every specialty the hospital had to offer over the next few days, from Infection disease, ENT, Cardiology, Pulmonology, wound care… He had more tests done, and yet he kept getting sicker. The sicker he got, the more frustrated I was getting. I was watching my husband die before my eyes. I could not tell him, how sick he was, and just how scared I was. I was mentally starting to prepare myself for the worst. It was not until the Thoracic surgeon came in to see us, that I saw any hope in not losing Steve again. He was on Vapotherm (Vapotherm High Flow Therapy (HFT) is a type of high flow nasal cannula (HFNC) that uses small sized nasal prongs to assure effective flush of exhaled CO2 from the upper airway in addition to oxygenation support.  HFT reduces work of breathing (WOB) by providing high flow rates of heated and humidified oxygen rich breathing gas through a simple nasal cannula.  Patients experience rapid symptom relief, and mask-free delivery improves patient comfort and simplifies nursing care). It was on the highest level the floor could handle, you see I found out later, that the CCU was full. We were suppose to be transferred back to them, but there was no room. The surgeon came in, did an assessment on Steve, looked at both of us, and said “ok, Ill book you for the OR tomorrow after noon, it will be late in the day maybe 5pm.” My jaw dropped… “what?” I think I managed to say. I explained to him, I did not understand what was going on, they did a Thoracentesis (THOR-ah-sen-TE-sis is a procedure to remove excess fluid in the space between the lungs and the chest wall. This space is called the pleural space. Normally, the pleural space is filled with a small amount of fluid—about 4 teaspoons full) on him earlier, did the results come back bad? He looked at me and said “Has anyone told you what is wrong with your husband?” That scared the Hell out of me. “no..” in the smallest voice I could manage, without breaking down into tears… he said come with me, I looked at Steve who was, for lack of better words ‘unconscious’… I knew for sure he was leaving me, and very soon. His color was grey, his O2 was only in the high 70’s low 80’s. The doctor and I went to the hallway and he showed me the picture of Steve’s CT scan of his lungs. His left lung had pleural effusion  (an abnormal amount of fluid around the lung. Pleural effusions can result from many medical conditions. Most pleural effusions are not serious by themselves, but some require treatment to avoid problems.   The pleura is a thin membrane that lines the surface of the lungs and the inside of the chest wall outside the lungs. In pleural effusions, fluid accumulates in the space between the layers of pleura. Normally, only teaspoons of watery fluid are present in the pleural space, allowing the lungs to move smoothly within the chest cavity during breathing..) and pneumonia. His right lung had a different type of pleural effusion; his lung was the size of a lemon, with a big thick white “boarder”. I had seen CT’s of lungs before I knew what normal was, but I had never seen anything like this before in my entire life. The doctor explained normally when you have pleural effusion the fluid will fall to the base, and compress the lung up, making it hard to breath. Steve had scar tissue on the upper side of his lung, which had webbed and trapped the fluid, so it was compressing his lung to the side. The fluid had infection in it, so even though he was getting IV antibiotics, they were not able to do what it needed to do to clear the infection. The doctor was going to go in, clean out the webbing, fluid and infection and wash his lung and surrounding tissue. He was then going to “peel” the rind from his lung. He explained it like this “His lung is like a lemon, and it has a thick skin on it, just like the rind of a lemon; I will peel that off and his lung should ‘pop back’ to normal size, if it does not  we will inflate his lung back” I stood shocked… I looked at him and said “ok”. We went back to Steve’s room and he listened to Steve again, and looked at me. He looked at the clock and said “if it was not so late, I would take him to the OR now…” Ill be back first thing in the morning; I need to talk to the nurses before I leave”.

That night was the third longest night of my life. I was able to wake Steve enough to talk to him; we called his parents and a few friends. We would be going into this, alone…As the night went on, Steve got a little worse, with each passing hour.  We had nurses, respiratory therapist, and doctors in our room each hour for the entire night. I told Steve how much I loved him, and that no matter what happened, he made me the happiest woman on the planet. Steve told me that he loved me, and squeezed my hand while he looked into my eyes. 

It was early the next morning, the surgeon came in to see us, he had been thinking of Steve all night long. He checked Steve over and again, looked at the clock and shook his head. “I came from the OR, I have a patient that is being prepped on the table, or I would take him, now…I will be moving my other cases today, ill let the nurses know. He will be in the OR before 2pm.”

I made the appropriate calls, to the few that Steve wanted to speak too. Speaking was hard and he was scared…It was a long, scary day. I did everything I could to wear a mask that did not show my fear, or that I was dying on the inside because I felt that I was going to loose him. 

We had just been wheeled into pre-op area; The nurses, started to try and remove me from the room, saying “you can come back before we go to the OR, while we prep him…” I was with him, refusing to leave; keep him calm was my primary focus. I ignored the nursing staff. The respiratory therapist that came with us told them, “you have exactly 5 minute before; Steve starts getting into trouble, trouble as in he will not be able to breath at all” The nursing staff looked at me again, and asked me to leave and they would show me the waiting room. I looked at them, having not slept for several days, dried tear marks streaking down my face, holding the hand of the man that I loved… “She keeps him clam, she can stay as long as she wants, we need to hurry, we have just a few minutes before things go bad.” came the answer of his surgeon who walked in behind us that no one noticed. The nursing staff did not like that answer but they left me alone. I knew I had to remain calm, and let them do what needed to be done. The Anesthesiologist came in spoke to Steve and I. Steve had done an amazing job at staying calm until this point; I had done an amazing job keeping him that way, and keeping myself calm as well.  Then, the true test  of calm came, the two doctors spoke in hushed tones, at the foot of the bed… “two minutes” came the voice of the respiratory therapist. Then the words came from the doctors that broke all the calm in Steve, the fear in his eyes, he looked at me, his puplis dilated, tears filled his eyes, heart rate monitor started beeping… “We have decided to keep him on the ventilator after surgery, to help his lungs heal. It will be a few days” I could not tell you what doctor said it… I flew to his line of sight, as I silently nodded my head so they knew that I understood. I looked deep into Steve’s eyes. He had been searching for me, when our eyes locked. I said very calmly.. “I love you, I will be at your side every second, I know you are scared. You will be ok. I will make sure of it. Now, you promise me something, You come back to me, ok. Now, your going to go now, they are going to give you medicine to help you sleep, when you wake up I will be right at your side. Thumbs up? I love you to the moon, stars and back again, you’re the sunshine that lights my world, don’t forget that…I love you” His monitors settled down, he nodded to me, and mouthed the words, “I love you, thumbs up” our hands were pulled apart as they pulled him from the small room and took him to the OR; the sedation medication already starting to calm him.

I was able to not even take one step before I collapsed on the floor. The few nurses, who were at the nurses’ station, came rushing over. I was a sobbing, pile of person, on the floor. I told them I was ok, and that I was sorry…but everything we had been through…. One of the nurses looked at me and said: “it’s ok, we understand”.

I walked out to the waiting room and it was empty, not another soul. I was in the old waiting room, having made a wrong turn. Now that I think about it, I’m sure that an angel leads me to this room for a reason.  I stood in the dark, the only living and breathing soul in the room. I felt so lost, I did not know what to do, where to go. I had spent the past full days and nights, not sleeping, barely eating, and putting all my own personal needs to the side for Steve. Every second of the day, every breath in my body was for him. I loved him with every fiber of my being; I finally had let myself give into the fear that I had been holding back. I finally had let myself give into the feelings that I had been holding back, not wanting to show just how scared I was, and how worried I was that he was going to die. I stood in the dark room, and cried, ugly, sobbing kind of crying that I had been holding inside. I could not tell you how long I stood there, how long I cried, how long I was alone in that room…I just knew that when I was done, I had found my strength again, I had found the brave face again that the world had been seeing, I was able  to put my mask back on, to face my family who was waiting for me.

 

One hour.

 

Two hours…

 

Three hours….

 

Four hours…..

 

Five hours……

 

Six hours………

 

Seven hours………

 

Eight hours………

 

I was finally at his side, looking at him as he lay in the CCU, the ventilator breathing for him again. His eyes closed, a tube coming out of his chest with drainage going into a box, bags and bottles of fluids and medications. The cycle then started over again, I fell back into the same roll. After the first night, the nurses finally realized that I was not leaving, and I was helpful to them and Steve.

 

Surgery had been a complete success. The surgeon again told me that he wanted to give Steve’s lung some time to heal, so a few more days on the ventilator, after what it had been through. He was feeling confidant that the infection and scar tissue was all cleaned and washed out. He was feeling good that Steve would make a full recovery, and be just fine. 

 

Steve spend another three days on the ventilator, and an additional 4 days before he was able to be sent to a regular floor. We had good days and bad. He had issues again, with his swallowing, from being intubated again, but he was able after a few days to soft food. I had finally noticed that he was getting better. His color of his skin was pink. He started to have more energy, each day he was getting just a little better. We would take walks starting just in his room, then around the unit, he was using his walker like it was an extension of his body. He was my old Steve again, well he was the ‘old-post-ABI’ Steve again.

 

We had been through hell and back again. The doctors that would check on him daily even said how good he looked, and how much better he was getting each day.

  

It was finally discharged day! This time, we had spent 10 days in the hospital from start to finish. During this time, I had made a few decisions on how our future was going to go. I stat down with Steve and my mom and explained; “I had been changed a bit, over the course of this time in the hospital. I broke just a little bit on the inside, and I had a big decision to make. I explained that I had been juggling the past almost 2 years: nursing school, caring for Steve, working and being the head of the house. I could not do it anymore. I had to give something up. I knew I would never give up on Steve, so it was either work or school. I also knew in my heart that I could not give up work because that was how we were surviving.” Before the words were completely out, both Mom and Steve said “NO! You’re not quitting school!” I remember staring at them, and asking “what am I suppose to do?” tears rolled down my face. Steve and mom looked at each other, and they already discussed this without me knowing. The plan was that Steve would move in temporarily with my parents while I was in school until I graduated. My job would be to focus on school and work, and nothing else. Mom said she would take care of my weekly food shopping, and food prep. Steve said he had talked to Mom about this before I even mentioned it. He said to me “you have done a good job, I want you to finish school. I can not work, but I can do this to help us.” Over the next couple of weeks, we settled into our new routine.

 

For me, home life was very different. I was now living alone, living day to day without my Steve. I had even taken Gracie down to stay with Steve. I had never lived alone, and I had exactly 1 week to get used to it. My first weekend back to work was routine, it was the few days before school started that I needed to adjust. I put all my time and energy into prepping for my next rotation at school. When my pediatric rotation started, I was already set into my routine. I spend my days in class and my nights in the library or my home study room. My weekend nights were spent at work and days were either sleeping or studying. The eight weeks of the semester seemed to fly; it was done before I knew it. Steve and I worked on a new routine, for our relationship. Face time, text messaging, and phone calls were now our main form of time spent together.

 

Steve was adjusting to new way of life too. He was living without me for the first time since we had been married. The doctors told us it could take six months to a year for his body to heal and be back to his normal. Home rehabilitation became a daily routine for him. He would start with walks around the first floor of the house as the weeks and months went on he slowly progressed to walking to the mailbox, then around the circle in the neighborhood. His body had been through so much in the past month, we were told it would be six-eight months before his body was back to ‘his normal’.

Thank you for reading the end of Steve’s story. Our journey during this time started on January 28, 2015, our last day of discharge was February 25, 2015. After one year he is no longer using a walker and has found a way to live with my parents while I am finishing school. I am able to spend holidays off, and school breaks with him. Now that they have moved to Delaware, he has the added benefit of being near the beach and having a quiet place to heal. He is very supportive of our situation, and I have adjusted to living alone, even though it is not easy. Steve has good days and bad days…He has things that he struggles with on daily bases, but is learning to adjust.

 

 

May 19, 2013… Steve’s Story

Well team, here it is. This is a very long, emotional post. I am sharing Steve’s story, from my point of view. I have left some details out, out of respect to Steve. I have discussed this post with him, and he gave me permission to share his story. This is something that changed our lives forever. Grab your box of tissues, and take a walk back in time with me to the scariest night of my life up until this point in our lives. I was 35 years old, not even had my 36th birthday yet. Steve had just turned 36 years old when this happened to him.

I will remind you, to respect, that this is very personal, and this is Steve’s story from my prospective. This has been a very emotional experience to relive this. I hope it helps people to understand Steve better and to understand what motivates me, and why I do what I do.

I get asked all the time, about why Steve is not with me during the semester, and why can’t he work, and other not very nice things… He has come a very long way. In order for me to do what I need to do, in order for me to have a future for us, I need to be able to focus on school and work. It kills me and him just a little each day when we are not together. He has been staying at my moms since last spring, after his lung surgery. He knows that the hard work, dedication and passion that I put into my schooling is required for me to work full-time night shift and finish nursing school. He knows that as soon as I’m done and graduated from school, he will be home with me, and we will have the life we deserve.

The accident that I had may have delayed that, a bit but, I will not let it prevent it from happening.

You will notice, that the post has a bit of a cliff hanger… that is not to keep you in suspense. I simply need to pull myself together to write about another emotional experience in our life… please be patient with me.

In November of 1994 we started dating, I told him that I was in this for the long haul and he agreed. When we stood in front of family and friends on September 28, 2002, the day we were married, we each made a pledge for better or worse, sickness and in health, till death parted us. We had been through a lot during our relationship and our marriage, but we loved each other, we had made a commitment to each other. I knew that our life was changed; little did I know just how much our life would be changed on this day.

May 19, 2013 Approx 4am

I was at work when the call came to my cell phone. I looked at the caller ID that flashed on my screen. It was our best friend, Bill. I knew something was wrong because he never called me at this time of the morning unless something terrible had happened. I could hear the worry in his voice, as soon as I answered. “Steve is being rushed to Anne Arundel…” He was found unconscious, gray in color, I think he might be…we called 911. They came, were able to revive him, his respirations were barely visible. He was found covered in vomit, and almost dead. I jumped up from my computer where I was charting from my morning rounds. I ran down the hall, to my charge nurse, told her in a hurry, what had happened, she took my work phone and papers. I ran down in 8 seconds, all the info on my patients that need to be told. My coworkers opened the locked doors to our unit, and one ran to the elevator to hold it open. I could not will the motor to move fast enough. On the first floor, the doors opened and I ran, down the hall of the hospital, with tears streaming down my face, my breath catching with every inhale. As I passed people I knew, they all asked, “Are you ok?” “What’s wrong?” I got to the emergency room, and realized that I had beaten the ambulance. I ran through the doors, swiping my badge as I went to get through the locked doors. I ended up outside, in the ambulance bay. I was crying so hard. My mind was racing, the argument that happened between us before I left for work, words that we spoke to each other; words that now neither of us could take back now. I found my self pleading, begging on my hands and knee’s. Praying to every deity, I knew and some I did not. My phone rang again, and I almost jumped out of my skin; it was Bill. He and his girlfriend were on their way, to be with me. Bill was Steve’s best friend, since they were young children. Bill was also, my best friend for almost 20 years. We had been through everything; he was our best man when we married. We laughed, cried; our lives were entangled and he knew me; exactly what I needed. His voice started to calm me down. Just as an ambulance, pulled in to the bay lights flashing. I knew in my soul, in my heart that Steve was inside. I had a sick feeling in my stomach, that all was not right. I hung up the phone, saying “I’ll see you soon…” I stood to the side, willing myself to calm down; knowing that if I was hysterical I would be asked to leave. As the doors opened, I could see the just how serious the situation was. I could see his body, laying on the stretcher. He had a mask on his face giving him oxygen, wires, tubes and machines connected to him. The paramedics who wheeled him into the hospital, recognized me, not just two weeks prior to this they came to my house to pick up my mother-in-law who had fallen at my house at a mother’s day celebration. The paramedic, looked at me, and a grim, sad look took her face. She silently shook her head. I spoke to her in a calm, soft voice “that’s my husband” is all I could say. The look of horror on her face, she simply said, “I’m sorry”. I walked beside them, touching his shoulder. His eyes were open but not seeing. I watched as they wheeled him into the treatment room. I stood outside the room, letting the nurses, doctors and techs do what they were trained to do. The staff stood around me, asking me questions, his name, date of birth, asking his medical history, what brought him in, his medication list, it was rapid fire questions, to help them treat him. I answered like a robot, telling them what I knew. The medication question is what stopped me. I knew his medications like I took them myself. All of the medications he took for his health problems; blood pressure, cholesterol, diabetes and his pain medications. Normally, I could rattle them off spelling each one, giving the dosage, and the frequency. My brain froze; it was blank, empty space. I seemed to freeze as the world kept moving around me, the people running down the hall, the crash cart being pulled from the alcove behind me, the doctors running in to his room, the nurses pulling medications, someone calling for an intubation kit. I started to loose my footing, I had spots starting to cloud my vision, the hallway started to spin. It was at that moment that a chair was placed under me. The next thing I knew I was sitting down. I had a staff member who was standing at my side; I said to her, that my brother bill and his girlfriend were coming, please send them back as soon as they arrive. You see at that time, I needed them. I needed to see family, and they were family. My eyes focused on them as they turned the corner; I broke right then and there. I knew in that second, that no matter what happened, to the love of my life, my partner in life, my entire world who was possibly dying; we were not alone. I had arms wrapped around me, and I sobbed. It was the ugly kind of sobbing. I don’t know how long we stood in the hall. The three of us holding each other together, my two best friends and I.

It felt like hours or days later, a hand touched my should, it one of the nurses. She told me that they had cleaned him up, that he had lost his bowels, and bladder; and he was now on a ventilator to help him breathe, he had also gone for a CT scan of his brain. She wanted to prepare me prior to seeing him. The next thing I knew, I was standing in the room with Steve. He was very swollen and pale. His face was alien to me, I knew that he was the man I loved, my husband, my entire world, and he just looked different. I very softly kissed his forehead and whispered in his ear, that I loved him. It was not long before the doctor came in, to speak to me. When our eyes met, recognition crossed her face; she looked at Steve, then at me, then down at the paper in her hand, as her eyes filled with tears. Very softly she spoke, “this is your Steve?” I shook my head and she came over to hug me. You see, she knew me since I was a young girl. My mom worked in her office for many years. I felt a slight calm, knowing that the team who would be treating him, was a highly respected group of physicians. It was then that I herd the words for the first time, Anoxic Brain Injury (ABI). To help you understand, I have pulled information from the brain and spinal cord injury website

“Adequate oxygen is vital for the brain. Many factors can cause the brain to receive inadequate oxygen. When oxygen levels are significantly low for four minutes or longer, brain cells begin to die and after five minutes permanent anoxic brain injury can occur. Anoxic brain injury which is also called cerebral hypoxia or hypoxic-anoxic injury (HAI) is a serious, life-threatening injury; it can cause cognitive problems and disabilities. Some HAI injuries are due to a partial lack of oxygen; the term hypoxic means partial lack. Other HAI injuries are due to a complete lack of oxygen; the term anoxic means total lack. The greater the loss of oxygen, the more wide-spread and serious the injury will be.”

Steve had been without oxygen and suffered brain damage; he had aspirated vomit into his lungs. Officially they were treating him for pneumonia, and brain swelling so he needed to be sedated to give his lungs and body time to rest and heal. The machine that was helping him breathe also was providing him with oxygen, something that his brain had been deprived of. He would be sent to the critical care unit, for a short time until his condition improved. He had swelling of his brain, that was being monitored, if the swelling did not stop, then he would be taken into surgery to relieve pressure on his brain to avoid further damage. As I listen to the doctor talk to me and give me full updates, I could feel my brain listen, and process but I also could feel myself separating and moving away. I could feel myself watch the scene from afar. I could see the love of my life, sedated, swollen, pale and lifeless. I could see the worry on my face, the dried tear streaks that ran down my face.

After several hours, that felt like days we were transferred to the critical care unit. I had spoken with our parents and friends, given them as many updates as I could. His nurses, techs and respiratory therapists got him settled into his room; cleaned up and on his new monitors; the doctors came and went. I was told that if I wanted to stay, I would need to be calm. Steve was sedated and yet he could still hear everything going on, so to keep him calm I had to stay calm. This was something that each visitor to the room had to be told, and each visitor to the room had to be reminded every time. We spoke in low hushed voices, and out of earshot, if anything was being discussed concerning his condition. We would not know until they lifted the sedation the full extent of his brain damage.

As he lay in the bed, his ventilator made a rhythmic: whoosh, pause, whoosh, pause as it was breathing for him. His heart monitor would beep, blood presser cuff was set to inflate and deflate every 15 minuets. He had an NG tube placed ( a tube that goes into his nose and down to his stomach) that was suctioning a liquid from his gut. I can only describe the look of it as black/green sludge that had a smell of rotten decayed food. It was a putrid, rancid smell that hit you in the face as you walked into his room. It’s a smell or a sight I will never forget as long as I live. He had a rectal tube, which was draining the same looking black/green sludge; both tubes were emptying into large suction containers on the floor. He had several full containers that were lined up on the floor, that were filled to the top, each holding about 3 liters of sludge. His IV machine was beeping and flashing with several bags of fluid hanging from the top of the pole. His eyes would flicker open and shut, but he would not really see. I was hopeful that he could hear me, so I would whisper words in his ear, tell him I love him and wanted him to come back to me.

I had been awake since noon on Saturday prior to my shift. The day was now Sunday, and it was sometime late in the evening. I had not left his side since coming to the hospital. I had not eaten, or even left to go to the bathroom. The visitor policy on critical care unit is two persons at a time. I refused to leave his side; so only one other person could visit at a time. I wanted to be there if he was to wake up. I wanted my face to be the one that he saw first. His doctor, who was another part of the same group, was very concerned about my health. He convinced my mom to take me home so I could get some rest. My own eyes were blood shot; I was still wearing the same clothes from the day before, I would only leave on one condition any change in his condition, I was to be called right away, no matter what time. His doctor and the nursing staff agreed. I was not happy about leaving him, but I knew that he was in good hands and I could not do anything in the shape I was in. I would need to leave his care to the capable nurses and doctors overnight. Little did I know that would be the last time, I would ever leave him while he was in the hospital ever again.

I cried myself to sleep; only getting a few moments of sleep it was just enough to recharge my body. 5 a.m. the ringing of my phone woke me. I looked at the caller ID it was the hospital calling. My brain told me that it was either the doctor calling to give me bad news, or my unit calling to check on me…I took a very deep breath and pushed the ‘answer’ button. I would never have expected to hear the most wonderful sound on the planet. “Hi, honey…It’s me.” I burst into tears, sat strait up in the bed. I thought for a minuet that I was dreaming. I said “Hi, baby, are you ok?” he then said “I’m in the hospital, they told me I’m at Anne Arundel” I silently giggled and smiled. I told him that I knew, and I had not been gone very long; I was sorry I left him. I started to ask him questions, “did he know who he was?” “Did he know what happened?” His responses were slower than the Steve I knew. I could hear a difference in his speech. I could sense a difference coming from his through the phone, fear, uncertainty, and an almost childlike tone to his voice. He knew his basic information. When I asked him “what day did he think it was?” He responded with “Saturday”. I asked him the last thing that he remembered, after a long pause, he said: “Friday evening, we had dinner before you left for work.” A long pause, from my end of the phone, then I explained what I could, and filled in the blanks that I could. I told him, I would be there as quick as possible, and most importantly that I loved him. I told him, not to call anyone else until I got there.

A few hours’ later, I was sitting at his side, waiting for the doctors to make afternoon rounds. I had found out a nurse had let his sedation medication run out, by accident when she was in an emergency with another patient. What he woke was disorientated, scared had started to fight his intubation tube. So the doctor had decided to extubate him, to see how his lungs would do. This was not the plan that we had agreed to the evening before when I left. A new doctor was covering overnight and did not know the full plan. I was very happy that he was no longer on a breathing machine; I was very concerned about his lungs and his brain health. Over the next few hours, the tubes that had been inserted had been removed. His GI status was questionable, the medical team was stumped as to what had caused him to have the color and smell of what was removed from him. While waiting for afternoon rounds by the doctor I started to really watch Steve and notice the new things about him.

First, I noticed the cadence of his speech, it was ‘off’. It was not quite right, but I could not put my finger on it. When the staff would speak to him, I noticed that he would take longer to answer; he would look at me with a scared and quizzical look on his face before giving short, one – two-word answers after a delay. He would smile at them, but his smile was different, not the full mouth smile that used to reach his eyes that I knew and loved, it was now like someone who had had a stroke; one side of his mouth drooped just a little. His feet danced on the bed, like bending and twisting in very unnatural ways. The look in his eyes was so different. I would look into them, and they were the eyes of someone who was lost. They had lost the look of ‘life’. They were not quite ‘dead’ but it was just different. The color of his eyes even changed just slightly, they were a bit grayer than the hazel green they used to be. It made me extremely sad to see that the changes in him. I would watch him try to eat, he would use his fingers and hands. Eating things like jello, he would use his fingers, not a spoon. When his dinner arrived, I watched him struggle, with the fork and knife. He would grab it with his whole hand like a child just learning to use one, not the way a 35-year-old man who used them every day of his life. The nurses and doctors just assumed he always ate that way, and that he simply needed a bigger bed the dancing in his feet was because he was uncomfortable. His full neurological and gastrointestinal status was a complete mystery. His lung scans improved, over the next few days. He was transferred to a medical surgical unit and prepared for discharge. As friends and family would come to visit, they would all remark to me about the changes in Steve. I would simply nod, and smile. I was simply thankful that he was alive.

We followed up with our primary care doctor and were seen by a wonderful neurologist. We finally were given a diagnosis and what to expect. Steve has brain death of the inner basal ganglia both left and right hemispheres. To better describe what steve had been Anoxic Brain Injury (ABI).  Steve has a neurological movement disorder, Chorea. He suffers from the same symptoms as a patient with Huntington’s and Parkinson’s disease without the progressiveness of the disease. He lives with left sided ticks, and constant movement of his left shoulder, arm, neck and head. He also has memory and cognitive difficulties (his thought process is slower than normal) and balance problems. Steve’s brain processes things differently than you or I. After his ABI, he was not able to return to work, so he was put on long-term disability with his employer, the insurance company refused to pay for physical therapy or occupational therapy outside of the hospital because he was not evaluated while he was an inpatient by a neurologist. I did all of that for him, helping him to adjust to his new life with his new body and mind. I am very proud of how far he has come. It was almost one year after his brain injury that he finally was approved for full disability. 

I will give you a few examples of obstacles and triumphs that we have been through the past almost 3 years.

If we are to go to dinner, and he is asked what sides, he wants with his main dish and the wait staff rattles off 5-6 items; he needs more time to process what each item is, and what he likes to eat. He will normally look to me, and I will take the list down to 2 or 3 options of things he will eat. I also will slow the rhythm of my voice down, to give his brain the time it needs to process.

Steve can no longer drive, or work. This has been a huge disappointment for him. He has lost some of his independence.

When he gets upset or frustrated, his symptoms get worse, his ticks and involuntary movements are very bad. He also has outbursts, which sometimes are uncontrollable similar to a person who has turrets syndrome. After Steve’s Anoxic Brain Injury (ABI) it was over six months before he laughed for the first time. We would tell stories, jokes and laugh and he would look at us with a bit of a lost expression on his face. He would always look to me with a slight smile but I knew he did not understand. I would simply grab his hand and smile at him. Then, it was November 2013 someone was telling a funny story, and the most amazing thing happened; Steve laughed, I mean a long belly laugh…it just went on for a few minuets and it was the best sound I have ever heard other than his voice on that Monday. We were all sitting around and just looked at him, I had tears in my eyes, then we all started laughing with him. It was like hearing your little one really belly laugh for the first time, a genuine laugh. I have never forgotten that.

Steve has come a very long way since his ABI, and I love him for who he is. The medication he takes, for his Chorea, has a very bad side effect, major depression and suicidal thoughts. Now, I know what you’re thinking, why on earth would I let him take that? Well, the answer is simple. It’s the only medication that helps him. We went through several different medications, and dosages. This medication was a last resort.  This is the reason, that during the semester, he now stays with my parents. I am gone some days for 18-20 hours of the day betweens school and work. When I do come home, I am nose to my books and studies. I do not want him to be alone that many hours of the day, every day of the week. He also takes a medication that is generally for turrets syndrome. The combination of the two has greatly made a difference in his symptoms. His neurologist wants Steve to see a movement specialist at the University of Maryland, but the only insurance that I can afford to work only covers providers that are in-network, and we cannot afford to pay out of pocket. We take things as trial and error and make the best of the situation that we are in.

It took 2 ½ years, but we finally have a diagnosis for his gastrointestinal issues he has been having. Steve would go through a cycle, he would eat, anything and everything non-stop like he is starving, then he will sleep, I mean he could sleep for 24-35 hours, then the belching will start, the smell is exactly what I smelt that when he was in the critical care unit, rotten, decayed food, then the vomiting will start, projectile uncontrollable, forceful the same black/green sludge, then his bowels will start to work, then he would be exhausted for about a day then next day he would be better. The projectile vomiting sounds like someone is pouring out a bucket of water from 3 feet off the ground, every time this happens to him, he is not getting oxygen or breathing. If he were to force himself to inhale he would aspirate that into his lungs. We finally, after going through this cycle 4-5 times per month at its worse, we saw the right gastroenterologist. Who did some testing on Steve to determine the cause? A colonoscopy proved to save his life because a few polyp’s were found, that thank goodness they were caught early, they were biopsied and found to have precancerous cells in them. So he is now on a protocol.  The upper endoscopy and the detailed account of his symptoms gave us a diagnosis. He has been diagnosed with Gastroparesis. Gastroparesis interferes with normal digestion, causing nausea, vomiting, and irregular blood sugar levels. The spontaneous movement of the muscles (motility) in his stomach does not always work. Normally, strong muscular contractions propel food through your digestive tract. In Steve’s case, his stomach’s motility works poorly and sometimes not at all. The cycle that he was going through, now only happens about once per month with his medication he now takes. 

 

Steve has good days, and Steve has bad days. Due to a fully torn rotator cuff on his left side, he suffers from chronic pain. His should is constantly moving so to have it fixed is uncertain. Thanks to a fall off a ladder when he was working with a plumbing company when he was 20, he has lower back issues, that also cause him pain. We do what we can for him, and he has an amazing team of doctors on his side. It took a while to find the right ones. I am glad that we did, finally, get a good fit.

 

I have learned to be very patient with Steve. I am a bit more understanding and very protective of him. I am the one who takes the responsibility of everything. That is why finishing my nursing degree is so important. Our entire future depends on me. I will do anything to make sure we both have everything we need, so we are successful in life.  I value each day as a true gift, and when things are frustrating, and I am not wanting to be the one who has to do everything, I try to remember how ‘Steve feels…’ He and I have talked and he gets frustrated and mad at himself for this happening. He wants to be able to do more to help me. 

The second part of this post is not complete.. the last several days have been very emotional reliving his ABI and the things we have gone through…  Those that know my whole life story, know that I love Steve with every fiber of my being. No matter, how hard our life is, no matter what set backs we face; he and are are like orbiting planets, one can not survive without the other. 

This takes place last January when I almost lost him again… 

Last January 28, 2015

I received a phone call from him; he was having a medical crisis and needed me. When I arrived to help him, I was unsure if he had had a stroke or what was going on.

He was not able to hear anything, he was screaming to talk to me. He had total left sided weakness, he was swollen, and was begging for water, drinking 5-10 bottles of water in about 2-3 minuets. I could not get a blood pressure on him, and his pulse was weak and thready. I listened to his lungs and I could not get clear sounds, they were very diminished on both sides; I did a quick neurological assessment on him and decided he needed to go to the hospital NOW. I pulled him up from the chair and had him lean on my back and we walked to my car. I drove him to the hospital; instinct told me if we waited to call 911, he would have died. I knew something was very wrong. We got checked in to the emergency room, the only way I could calm him down was to look directly at him. I would have him focus on me, and I would ‘mime’ out what I was asking him, to get him to tell the nurses what was wrong with him. That is when I felt the goose egg lump on the back of his head. I asked him if he fell, and he did not remember. The nurses were unable to get a blood pressure, or a pulse to register on the machine. His oxygen was registering in the 70’s…we have rushed strait back. The nurse we got, was absolutely amazing! She immediately got the doctor in to assess Steve’s condition. I was able to remain calm and quickly went over all of his medications and his neurological conditions. Blood work, X-rays, CT scans, Lung scans he was put through a battery of tests. I went with him for each thing. He was very scared, and each time people would talk to him he would look to me. One he could not hear anything but “the ocean waves in his ears” as he said, so I would say, “look at me”, I would use my fingers to point, my eyes then his; then I would say “its OK” and give thumbs up. He would then give thumbs up, and he would be able to do what ever needed to be done.

Each time we retuned to the room, they would draw more blood work on him. They had hung fluids, he was severely dehydrated, his breathing was getting worse, he was on high liters of oxygen. His nurse was doing neurological checks on him every 15-20 minuets. The last bit of blood work they had done, the doctor came in and said that he was going to be admitted to the heart and vascular floor that he was in acute renal failure, and his heart enzymes were not good. He was going to send him for one last nuclear lung scan, then he would be moved to the floor. This is when Steve started to turn for the worst. Steve is claustrophobic, and also being sick and scared, I of course was going with him for the scan. The staff was glad to have me to keep him clam. As the scan was being done, it was to a point where the machine would come very close to his face. I was standing at his side holding his left arm up for him, since he could not. I told him (yelling in his ears..) that it would be ok and it was almost done. When I looked at him, I knew something was wrong. He was gone, I had seen that look in his eyes before… “GET HIM OUT OF THIS MACHINE, NOW!” I yelled to the staff, they came running in. We (yes, we because I helped them) moved him to the stretcher and I wheeled him back to his ED room with the help of the staff. I called for his nurse, “something is wrong with Steve! Come in here!!” I said he has had a neurological change, look at him… She performed the check on him and looked at me. She was able to get him to blink, and she said to him, “Do you know your name?” he nodded, and yelled “Steve” then she said “do you know who I am?” he said “nurse” then she said “do you know who she is? ( and pointed to me)” he looked at me, then at her, “that is my wife” I walked up to the side of the bed, so he could see me better. She asked him again, “Steve, what is her name?” Steve looked at me, and his eyes filled with tears, then he looked at his nurse and yelled “She is my wife, the love of my life” “Do you know her name?” she asked one last time. This time, my eyes were filled with tears. “No”, was his answer as he looked at me, so scared and tears running down his face. His nurse then called the doctor into the room, and more staff came with him. He was put on a BiPAP machine to help his breathe while they did took blood culture’s to see if he had an infection in his blood. I know now that his body was going into septic shock. The doctor looked at me and said: “Mrs. Holmes, we are going right now to Critical Care Unit, on the 3rd floor, your husband is very sick we need to go now.” My world, the love of my life, was wheeled out of the room. His nurse looked at me and said, “I’m going with him, I will not leave him”

 

I was numb, I walked out to the waiting room to his waiting friends and family. It was about 6 p.m. we arrived at the hospital at 9am. The entire day was a blur to me. I went over as many details as I could, updating everyone on what I could tell them.

 

We arrived at the 3rd floor, I knew that the staff needed about 30 – 45 minuets to get him settled in and hooked up to monitors. It was almost 2-3 hours later that a nurse finally came out and called for “Holmes”. I jumped up, grabbed my mom’s hand and said: “everyone stay, here please”. I wanted her to go with me since she could fill in any blanks I would miss. We followed his nurse to his room, as I came around the corner, the nurse said, “I’ll get the doctor to speak with you.” As she rushed down the hall, I turned to his room. I could see several staff members still in the room, working on him; I knew this was not correct. They had enough time to get him cleaned up and hooked to monitors. I looked at my mom and said “Oh, god…I thought they had intubated him, I don’t think I could take that…” the words had not completely finished leaving my mouth when a staffer ran by with a ventilator and someone yelled, “get the doctor now, he need to be intubated.” I grabbed the wall and almost passed out, a hand grabbed me and lead me back to the waiting room, a doctor will be out to speak with you. I walked out, everyone in the waiting room, all looked up at me, some stood…I walked forward, and simply fell to my hands and knees on the floor, I crumpled into the smallest ball I could get into and started to sob. You could hear a pin drop on the floor everyone simply froze. They all waited for me, to get myself together. I was able to move to a seated position on the floor. I told them all what had just happened. What felt like, hours later when a nurse came out, “Holmes” This time, it was my mom who took my hand and guided me through the door following the nurse to a little room. My brain kicked in, and I remembered back to the last time we were here, “you must be calm or they will ask you to leave” We stood in a little room, the Doctor and an NP came into speak with us. I was asked, “what started all of this? Why did you come to the hospital?” I started without thinking, and told our story, giving all the details and symptoms that I could to help figure out what was wrong with him. Then because I was so used to it, I told him of his neurological issues, the brain damage and went through that whole run down. The doctor was a bit impressed, that I could give such details and I could basically read his medical chart out of my head. I explained about the brain damage, and the fact that he cannot have any more episodes of lack of oxygen, I knew his blood gas numbers from the ER, and his carbon dioxide was very high, and his oxygen was low. I did not want him to suffer any more brain damage. The doctor finally, looked at me and said “STOP” I was a bit shocked and now annoyed, I was giving him useful information and he did not understand. Then the doctor told me what was happening. During transport from the emergency room to the floor, Steve went unresponsive, even to pain stimuli. The nurse that came to get me, the first time, came too soon. They needed to intubate him to save his life. “My main concern right now is to keep your husband alive for the next 30 minuets, then to keep him alive for the next hour.” “Then every hour we can keep him alive, that will be a miracle” I stood in absolute shock, stick still, not breathing, blinking or anything. “Your husband is in multi organ failure right now, he is severely dehydrated and is septic” My job is to keep him alive, and to figure out where the infection is” I did not know what to say, other than…“ok” I asked if I could see him, and they said yes. I then asked, “Can I stay with him? I know the rules, Ill be calm and out of the way. I can’t leave him.” I knew it was normally against policy. The doctor looked at me, and said, “I’ll let the nursing staff know, you may stay”

 

I went to his room, held his hand my mind flashing back to May 19, 2013, we were just down the hall about 3-4 rooms away. I kissed his forehead and told him I loved him. I went to the waiting room, to update his family. It was still a two-person visitor policy, I made it very clear, I would not be leaving his side once I went back into his room. So, one at a time could visit. I again reviewed the rules, on keeping calm and if you cant control your emotions then you can’t visit.” Everyone nodded in agreement. I was hugged, and many words of love, support were given.

 

That started the first night of my watch. Steve was burning up with fever, so bad he was burning through his sedation medication. I was able to assist the nursing staff and keep him a bit calm in between sedation bottle changes. I had it down to a science, as the medication would start to wear off, and the nurses could change it, or the tubing I would stand so he could see me. I had about 1-2 minuets, to tell him several things…I would hold his hand and squeeze, looking right into his eye’s I would say “Your ok. You’re in the hospital, you are very sick. You have a tube helping you to breath. I am here, I am not leaving you, and I love you.” He would look at me, with fear in his eyes, then comprehension, then a slight squeeze of my hand, and he would be out again. It broke my heart each time, this process happened. For the next 3 days 24 hours a day, every hour or two this would happen. He was treated for severe pneumonia and an unknown infection.

 

You Can pick up the rest of the story on the next  post titled :

                  Steve’s Story Part II