The Fight For Life

Stephen’s Critical Phase  /  April – June 2012

Christus St. Vincent’s Hospital, Santa Fe, New Mexico

Christus St. Vincent ICU

The Critical Phase of Stephen’s Medical Treatment was a very emotional and frightening time, during which we were faced with significant advances and major set-backs.  This long-term uncertainty of Stephen’s survival was, by far,  the most challenging situation any of us had ever experienced.  It was difficult to return home, rest and sleep in the evenings, not knowing whether there would be an emergency call.  It was a terrifying time period that required us to be on “high-alert”  at all times.  The experience of witnessing a family member so dangerously close to death, while enduring unimaginable physical and emotional pain without being able to do anything, I imagine to be similar to the feeling of panic when someone’s buried alive.  

Looking back, I remember times of desperate sadness, tragic despair and moments of  absolute terror.  I also remember all of usDSCN0205 feeling an enormous sense of love, compassion and support from a united community of my brother’s supporters which included family, long-time friends, colleagues and well-wishers from around the world.    This amazing group of Stephen’s supporters had a common thread and unique bond of  love, compassion and hope for Stephen’s survival.  I believe that the sentiments and Prayers of this genuine circle of supporters combined with Stephen’s  commitment to a healthy body, and strong will and determination that has carried him through many life circumstances resulted in the MIRACLE that saved his life during the Critical Phase in the Intensive Care, Critical Care and Progressive Care Units at Christus St. Vincent Hospital in Santa Fe.

The following are a few excerpts from the Facebook Group “Prayers For Stephen” that represent the milestones of Stephen’s Critical Care Phase directly following the accident.  The full daily account can be found by joining the group “Prayers For Stephen” on Facebook.com or by clicking the following link – http://www.Facebook.com/groups/stevesrecoveryroad

  Unknown-2Facebook Post – May 3, 2012 – Surgery #1 – After my last post yesterday we met with the neurosurgeon that preformed Stephen’s surgery. Although we were very pleased that Stephen made it through the surgery., we were cautioned not to get ahead of ourselves. The risk of infection when you have a trac and two surgeries is very high. This is probably the biggest concern. Also, the reality is that nerves that run through the spinal cord connect many of our vital organs to the brain. When the spinal coard is severed, there is no way for these vital organs and the brain to communicate. Therefore, the organs must function on their own with no direction. Last evening after the surgery we were awaiting his return to the ICU when we learned that one of Stephen’s lungs had collapsed. Today, they inserted another chest tube to help him breathe. Last night we were told that he is indeed still in danger. If his medical condition remains stable for the next 14 days we can feel more confident that he’ll live. Stephen remains on a respirator unable to communicate with us. Standing next to my brother, holding his hand, knowing that the emotional and physical pain are unfathomable, and not being able to communicate with him is the most difficult thing I think I’ve ever endured. We have learned over these past two weeks that anything can happen at any time. We’re cautiously optimistic and taking life one second at a time.

Facebook Post – May 8, 2012 – Words of Wisdom – Last Thursday the surgeon that operated on Stephen’s sturnum said something like this…Throughout the medical phase of Stephen’s recovery you will feel like you’re in the Twilight Zone. My first experience with the Twilight Zone occurred between last night and this morning when we arrived at the hospital to learn that things were declining and looking extremely serious. Stephen’s vital signs were weak and being sustained with medication. Attempts and medications to calm him, unsuccessful. The Intenisvist (and physician who is the quarterback of Stephen’s care) seemed very concerned and cautioned us that things were not looking good. With Stephen’s condition ruled unstable all night and through mid-morning, the fear and anxiety were almost intolerable. Attempts to work and concentrate were virtually impossible today, but I (with my Mother’s encouragement) fought through it. While he is in this fragile state, we need to just stay away, let him rest and recouporate. The fact is that he has just had two very major surgeries. Being at the ICU for too long just isn’t helpful to him (or the staff taking care of him). I can tell you that this is far more easily said than done.

By 4PM I felt a strong need to return to the ICU. For some reason when you’re there you don’t feel that constant anxiety that somethingIMG_0451 will happen without your knowledge. Many nurses at the hospital have told me that medical recovery from sever trauma is often times far more difficult for family members than patients themselves. I’m not so sure about that just knowing what my brother is dealing with all by himself without being able to communicate, but I get the concept. Tonght, my father and I returned to the ICU at 5:00 PM. I have to say I had to take a deep breath and brace myself before walking through the door.

Once again, our collective prayers answered. Stephen’s vital signs were again stable. He was calm and relaxed with no fever. The Intensivist informed us that thing had turned far more positve thoughout the day. They have found the right mix of pain and anxiety drugs to keep him calm without causing damage to his body. Calm and relaxed is important because he has pnemonia, and when he’s breathing heavy and full of anxiety, with is pulse racing, he’s actually fighting the help of the respirator which causes irritation and lack of oxygen putting additional stress on his lungs. Hopefully this means that the antibiotics are doing their job and killing the pnemonia. Respirator reduced to 40% (which is good as it’s been as high as 75% over the past few days). Blood pressure and pulse all within normal range STABLE – the word and condition I had prayed for all day long. Plans to take him to catscan to take a better look at his lungs moved forward at 5:30 PM. We have since learned that he has returned with no incidence. Today, definitely was like being in the Twilight Zone but it’s over now. Once again, my brother has been victorious in his battle to live. Thank the Lord — and all of you for your prayers!

Facebook Post – May 14, 2012 – CODE!!  – I am reaching out to our friends this evening with incredible sadness. In the late hours of this morning, Stephen’s pulse was lost and then experienced cardiac arrest. Our family was called to the ICU not knowing what to expect. Stephen’s stopped breathing for approximately four minutes during which time doctors and nurses fought to save his life as they had done before. They were able to successfully recessitate him and this evening he lies in a medically induced coma until tomorrow morning when they can assess his condition and proceed accordingly. Although it is still a blur and I think I remain in a state of shock, I remember hearing that his lung collapsed and that there is a mass of puss like material beneath his lung that must be removed when he is stable enough. It is not believed by his physician that any brain damage was sustained by the lack of oxygen during the recessitation. Over these last few days, our family has struggled with the longevity of Stephen’s medical recovery, but we have been assured that it is not his will or lack of it that is the casue of today’s events. The ICU doctor said quite clearly and on three different occasions today, that my brother is young and strong and deserves a chance to live. His physician believes Stephen will make it though this. God Almighty – I am begging you — please do not take my brother tonight. I’m desperate and praying that you will choose to carry my brother through the sand tonight……. Please pray for us.

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Facebook Post May 16, 2012 – Surgery #2 – Checkmate! – I went to the hospital this morning and remained there all day at my brother’s bedside. He remained in a medically induced coma, with vital signs stable for most of the day. Surgery will take place at 7:30 AM (MT) tomorrow. We were told this afternoon, that my brother’s fragile state qualifies this as a “high-risk” surgery. As I listened to the intensivist describe the rational behind this surgery and the timing of it, the word that immediately came to mind was “checkmate.” Although this is very complicated to describe, I’ll do the best I can. Stephen has an infection which has been classified as pnemonia. The cause of this that he has been on a respirator for almost a month. Becasue Stephen has not been breathing naturally, fluid does not get expelled natrually. This fluid becomes a breeding ground for bacteria. This is the reason they try not to have people on respirators for long periods of time. They suspect that the severe blow Stephen took to the chest resulted in bruising, puss and some blood that has coagulated into a mass which is now below his right lung preventing the full expansion and compression of his right lung. They believe that this dense fluid which is on the outside of Stephen’s lung is growing bacteria that combined with the lack of natural lung activity is twarting the ability of the antibiotics to kill the infection (pnemonia). This puss/dense fluid is what will be removed. The hope is that after the surgery, Stephen’s lung will be able to expand and contract more fully, and that one of the sources of the bacteria will be eliminated, allowing the antibiotics to have a far more significant effect than they are currently allowing them to aggressively treat the pnemonia/infection and weene him off of the respirator.

Stephen is in a fragile state following Tuesday’s crisis. Tomorrow’s surgery has been classified as “high-risk.” We have arrived at Checkmate – although they’d like to wait for Stephen to be stronger, each passing moment is an invitation for the infection to become more dangerous and even deadly. On the other hand, he has been though so much phyically, the surgery in and of itself is a very dangerous proposition. There is no worse position to be left in than “No-Choice.”

Our family will be at the hospital before 7:00 AM.

This evening, I am unable to express any emotion that will not result in my complete decomposure…….prayers.

Facebook Post – May 17, 2012 – Post Surgery -#2 – For the past day or so, I’ve had to take some time to recover from what I haveDSCN0184 now decided to call Emotional Roulette. The night before my brother’s surgery I had a five hour silent conversation with Stephen. I guess when you’re desperate to communicate you believe telepathy might actually work….and maybe in some strange way it did. With razor like focus, I asked him never to give up and told him that I knew for sure he was experiencing physical and emotional pain so severe he might actually be tempted to. I reminded him that of all the people that I have ever known he had the most potential to actaully survive and that the reasons to consider choosing this fight were countless and very important. But, if these were to be my brother’s final hours I wanted to spend them by his side, holding onto his hand until the moment they came to take him to the operating room. There was simply nothing more important to me……

When the surgeon emerged from the operating room and told us my brother had made it through, I felt like cheering and jumping up and down, but I knew that it would be several hours or even days until we had anything at all to be happy about. The surgery has cleared out quite a bit of old blood and clots that resulted from the severe blow to Stephen’s chest giving his lungs a bit more room to expand and contract and possibly eliminating some root cause of the infection. This may result in a far more positive impact from the antibiotics. No one knows for sure……only time will tell.

IMG_0963Today, Stephen’s lungs remain severely infected. I actually had the opportunity to meet the infectious disease specialist today who is a a loss to diagnose in any specific terms what infection my brother has. I have become frustrated with the word pnemonia, which I have come to believe medical professional use as a term to describe any infection they are unable to diagnose. Our family is very focused on any signs that this mystery infection is being killed by the new regime of antibiotics. Today there were a few small, yet positive signs. His white blood cell count has reduced, he has had no fever, and his blood pressure is within normal range. Each day they will use a scope to view and remove the thick fluid that has been buidling up on the bottom of his lungs. A very strong regime of antibiotics will be adminstered with hopes that over the course of the next several days, we might see signs of improvement.

Stephen remains on life support and in a medically induced coma to enable him to rest completely while his lungs improve. I feel helpless when I see him there unconcious. He seems to like listening to music which actually seems to lowers his heart rate. No one really knows how a person feels or what they are aware of when they are in this state. All I know is that he looks very comfortable and peaceful – I hope this is truly how he feels.

I am mourning my brother’s presence. Nothing is or feels the same around here without him. I can’t wait until he’s awake again…..Much Love & Thanks to All!

Facebook Post – June 2, 2012 – I Can Talk! – Eventful can be a good thing, provided the events are GREAT! I was with Stephen most of the day and evening yesterday …. a day in which there were amazing developments..When I arrived at the hospital Stephen was, once again, off the respirator and on humidified oxygen only. There was a speach therapist working with Stephen. She had been there the day before to plug Stephen’s trac so he could speak, but he could only tolerate it for about 2 minutes. This morning, they tried again and for around 30 minutes, Stephen spoke in a very weak and raspy voice. I remembed on many occasion how much I missed my brothers voice and presence, not knowing if I would miss them forever. Watching him struggle to get the first words out and hearing his first attempts brought tears to everyone’s eyes. I remember the thearapist saying that Mom deserved to hear her name after so many weeks of worrying and missing her son….”Mom.” I fought hard to hold back the tears. He continued “Dad,” “Diane.” The speach therapist looked at a picture of the twins and asked Stephen what their names were “Cecilia,” “Adeline.” While he counted and recited the days of the week several of the ICU staff members stopped by to congratulate Stephen and let him know how remarkable his recovery was and telling him how “GREAT” he looks. He smiles and thanks them in such a genuine and grateful way. I have thanked each of these people so many times over the past six weeks, but when Stephen does it you can see the look of accomplishment on their faces…they feel happy and satisfied with their performance. Because

they have taken this journey with us from beginning to end, I feel that they experience these milestones in a very special way. I hope it reminds them that they are not only saving patients, they are saving families……like ours.

Moments after the speech plugged the trac and told us she’d return for additional trials. Stephen reached for the “miracle” St. Joseph oil that Father Terry had given us and wanted to pray insisting that Mom, Dad and I put the oil on ourselves. Mom then put some of the oil on Stephen’s legs, chest, back and forehead…….we held hands and said the St. Joseph’s Prayer.

Physical Therapy entered the room with the huge chair I had seen days earlier and announced that they’re plan was to get him out of bed for the fist time. Stephen was pretty worn out from all the activity and asked them to wait a while so he could rest and recover. About a half an hour later, he was ready. They moved him out of his bed, and there was Stephen sitting in a chair, completely upright. I continued feeling amazed and as we sat there quietly I told him how incredible he was and how much I admire his will, ability and drive to bounce back after all he had been through. He acknowledged me “Thank God I’m Alive.” I showed him the cross I had taken from his bedroom just days after the accident and explained that I had requested that this cross be blessed by Father Terry in the ICU at a time when there was little hope that he would live. I told him that I felt that this cross was very special, and that I hoped that he would take it with him and keep it close by on his journey forward….he thanked me and agreed.

Mom and Dad returned and visited for a while longer, but Stephen was tired and winding down from all the activity. After they left we quietly watched the basketball game together rooting for opposite teams — I lost. As I kissed him goodnight, I glanced over at the respirator which remained OFF since the morning. The nurse entered and explained that they intended to let him sleep breathing on his own, and assured me that she would watch over him carefully……..Today, I really did live in the moment, every single spectacular one of them….and it was truly breathtaking!

With the Love of God, All of our Prayers, the amazing ICU staff, Reiki Treatments, St. Joseph Oil and my brother’s strong will we continue moving forward.

IMG_0962Facebook Post – June 3, 2012 – The Turning Point – The amazing and wonderful events continued yesterday – Myoko brought the girls to the ICU visit in the morning. I wasn’t there, (mom and dad were) but I heard it went really well with everyone smiling and happy to be together again. Adeline and Celelia brought him small home made gifts and other small trinkets which he loves. Stephen has missed the girls ……seeing them will bring inspiration and motivation he needs to move forward. These children are so fortunate to have their father back. Someday they will understand just how hard he had to fight and the incredible odds he had to beat for them…..

When I arrived at the ICU yesterday following his visit with the girls, I learned that the nurses and physical therapists had put him on oxygen and taken him outside!!! I ran to the back door of the hospital in disbelief. There was my brother, outside in the huge chair sitting under the shade of a large tree. Mom, dad, James (a nurse that has been a very strong advocate of getting my brother upand motivated) and an two respiratory therapists. Stephen spends far more time outside than in and seeing him there made me think of how significant this particular step would be. Six weeks of being in a small ICU room would drive the sanest of people crazy. Experiencing the sunshine, light breeze and fresh air must have been wonderful and encouraging, letting my brother know that he would return to the things in life he loves most.

As we sat, I recieved a text from Myoko asking me to let Stephen know that following their visit, the girls were taling about how they would play with their father and help him, expressing their idea that he should have a pink wheelchair. I let Stephen know that the color of his wheelchair had been carefully selected by the girls and he smiled. Later in the day he mentioned the pink wheelchair again with a big smile on his face and I wondered — Ut oh — will he? With Stephen, you never know.

Yesterday, Stephen was temporarily moved off of the trac cuff and humidified oxygen and on to oxygen delivered through those two tinyIMG_0929 nose tubes and a portable tank, the kind you might see someone walking around with. Getting off of the trac cuff and on to oxygen will enable them to close the trac completely, and Stephen will be able to move out of the ICU to a rehabilitation unit of the hospital. This is not an easy transition, it makes Stephen very anxious. It must be very frightning to depend on a machine to breathe for you for six weeks, and then be completely on your own again. I can understand why this takes time and a significant amount of emotional energy. The trac plug he tolerated for 30 minutes the day before was on all day yesterday. As his vocal cords get stronger he is beginning to sound more and more like himself again. A few times yesterday the strong sound of his voice pleasantly surprised me.

It had been a day filled with activity and last night I spent time at the park and shared dinner with my nieces. They were very talkative and happy while they explained like little authorities how their father would be in a wheelchair and need help. Then they told me about the assistance dogs they have at school, and shared their opinion that their father should have one too….Together, they began thinking of names for it.

I returned to watch the basketball game with Stephen. We watched for a while together. Last night, thanks to OKC I won!

I asked Stephen how his day was. He said it was good but very tiring. I think it occurred to us both that he is so weak that the smallest bit if activity is challenging and tiring. The journey through rehab is going to require great patience and a great deal of encouragment and support.

Yesterday was another really good day, but one in which I was reminded and even shown a small glimpse of how truly weak my brother is and what lies ahead in rehab. I pray that he will have the great courage, tenacity and motivation, and that he, himself will embrace “baby-steps,” “marathons.” and yes, even the “twilight zone.”

IMG_1085Facebook Post – June 9, 2012 – Intensive Care to Progressive Care – On Friday, the 50th day of his hospitalization, Stephen was transfered out of the sterile ICU/CCU and I was overcome with emotion. I felt it should have been a time to celebrate, but to me fear and separation anxiety were abundant and it was very difficult to contain my emotion. I felt a sense of gratitude that I have never experienced before. The words “Thank You” just didn’t seem to carry enough weight for these remarkable people that had saved my brother’s life more than once, and rescued our family from complete and utter devastation. Each of the 50 days flashed before my eyes — the kindness, compassion, hugs, words of encouragment, mentorship, education and absolute commitment each one of them exhibited each moment (both day and night) were beyond anything I have ever experienced.

I hadn’t realized that I’d found a comfort zone each evening when I left my brother in their highly capable and skilled hands and the thought of ending our partnership produced incredible anxiety and fear. As I surveyed the tiny room my brother would spend the next couple of weeks in, it occurred to me that allowing myself to become comfortable and settled in this hospital setting wasn’t the right thing to do. These rooms are not intended to be comfortable, their purpose is to be adequate for a short-term stay. My brother has a bedrrom that he will return to — being on this unit of the hospital is not at all permanent or even long-term.

At this particular point, I can feel the medical phase of Stephen’s recovery is coming to a successful conclusion, but attempting to conceptualize the amound of work that he will need to do in this next phase, the rehab phase, seems insurmountable. In my perception, this phase has two very distinct parts that must be equally considered in order for Stephen to live a quality life moving forward. Physical Recovery and Independent Living – As I spend more and more time with Stephen, I become confident and convinced that he will excell when it comes to increasing his physical strength. I believe that the mentorship and training of the tharapists and the friendsips and relationships he will develop with others faced with the same physical limitations at Craig will result in my brother making huge strides physically. Emotional Healing and Recovery – Over these past two days, as my brother becomes more confident in his ability to breathe and less fearful for his life, he has begun to talk about his feelings and experiences while he couldn’t communicate. He is also beginning to contemplate and define his future. I find myself saying the same things to him that were said to me early on. It is incredible how these pieces of advice translate perfectly to almost every situation in life. It’s a marathon, not a sprint – I reminded my brother that if he were to assume the full weight of his recovery all at one time, he would be too overwelmed to overcome his injuries. Baby Steps – I explained that if he lived for each day and moment, in and of itself, and set goals that were very short term, he would be more inclined to realize his goals and celebrate his accomplishments often, keeping him in a far better and more positive frame of mind. The twilight zone – unfortunately there will be times that he feels depressed, sad unmotivated, fearful and overwrought with grief. I asked him to be understanding and compassionate with himself, allowing his mind to process all that he has been through – hopefully, these times will become less frequent and intense as he begins to conquer his fear and understand the full compliment of his ability to excell and move steadily towrds resuming his own life.

I hope Stephen will find comfort in his faith and ride on the wings of Collective Prayers from all of us – It is finally time for us to join hands, lift my brother up and place him with love and support on the road to emotional and physical recovery. I am eternally grateful for today for the opportunity to move forward along side Stephen, my family and all of you – Have a blessed Sunday.

Facebook Post – June 12, 2012 – The Tragic Set-Back – It could just be that Friday’s sentiments ment more than IIMG_0952 thought…..Stephen’s transfer out of the ICU/CCU was an indication to me that his life was no longer in danger and that the path to recovery was within our sight. I guess that’s the reason I felt I should be more encouraged than fearful. Fear, the instinct I’d felt strongly since his transfer proved instinctually on-point yesterday. Since Stephen’s transfer to the PCU, a more normal and open hospital unit, I became concerned about the lack of monitoring and supervision, higher patient/nurse ratios and infrequent visits by physicians. Stephen’s situation is somewhat unique in the sense that he can be doing just fine and over a short time his oxygen saturation level will drop into the 80’s indicating that he’s not getting enough oxygen. There can be a few causes, but the most frequent one is what’s called a “mucus plug.” These plugs are tricky because if he has one and it moves into his airway prior to being detected and removed, his airway is sealed off and his vital signs dissentigrate very quickly — these plugs are very dangerous and must be closely monitored in a preventive manner.

Advocacy became more and more critical with each day my brother remained in the PCU. The level of care combined with my brother’s limited mobility made me concerned and I increased my hours to practically all day and night. We’ve been though so much and the thought of going backwards was just incomprehensible. Although Stephen did not have monitors in his room, there was a computer in the nurses station that I referenced many times each day.

Yesterday, I arrived at the hosptial in the morning to find Stephen in relatively good spirits. We did physical therapy and the PT/OT hospital staff arrived to sit him up in a regular wheelchair which he had done once before. He had a spasm as they were moving him and he slid out of their grip creating a frightening and unsafe feeling for both of us. This was an accident and the two therapists never lost their composure but rather recouperated quickly getting my brother into the chair. I could tell that Stephen was scared, but we sat for a while and eventually he began to feel comfortable and good sitting upright. Shortly thereafter, Stephen’s nurse arrived with three or four students and began training them on suction and cleaning his trac. I was mortified that this would ever be allowed considering my brother’s infection and all that he has been through, but he tolerated it well and was kind and considerate to the students throughout. Stephen visited with his friend Alex and was put back into a clean bed. As we sat, he looked worn out and was struggling to breathe. I went to the nurses station to check his oxygen satuation. She referenced his chart and informed me that there had been an order written earlier in the day to remove him from the monitors becasue they were no longer necessary. I requested that Stephen’s vital signs be taken just to check to see how he was doing with oxygen. The nurse arrived shortly thereafter and put the monitor on his finger — “72!!” I could tell she was alarmed and in emergency mode requesting respiratory and physician assistance.

IMG_0899I was grateful that my father arrived at that moment, realized what was happening and began monitoring the situation with calmness and complete composure. My fear took over completely and I froze as uncontrolable tears and anxiety took over. Completely by coincidence Dr. Dammad, the doctor that had saved my brother’s life more than once, came walking down the hall towards us. When he noticed the activity in my brother’s room he entered and immediately sprung into action opening Stephen’s airways….this situation was all too familiar to him. With a sense of immediacy, he demanded that my brother be immediately returned to the ICU/CCU. I heard him say in a calm voice that there wasn’t much time and as he walked along side my brother maintaining his airway as Stephen was wheeled in his bed back to the ICU/CCU. With incredible calmness and composure he began issuing instructions to others and by the time we arrived in at the ICU/CCU the team was assembled and ready to sedate and bronc Stephen to clear his airways.

My father and I sat outside the room, experiencing the familiar sense of urgency and fear we thought we’d left behind……devastated.

The bronc was done and within minutes Stephen’s vital signs returned to normal with his oxygen satuation in the high 90’s again. Dr. Dammad emerged and told us that Stephen was safe and out of danger. He reassured us that he did not consider this episode to be a step in the wrong direction and that Stephen’s condition was not any worse.

Last evening he remained sedated, calm and comfortable as I sat recouperating watching the strong NM wind blow through the trees, once again with a strong senss of gratidude and the monitors that continued to reflect things remained normal until my confidence was restored and I was able to return home knowing that my brother had been returned back to the skilled and capable ICU/CCU team and, of course the incredible – Dr. Dammad.

Stephen remained in the CCU for the remainder of the month an was transferred to Kindred Hospital in Albuquerque on June 29, 2012.  Please click here (Rehabilitation Link) to lean about Stephen’s experiences at Kindred Rehabilitation and Lovelace Rehabilitation Hospitals.