Rehabilitation Road

Steve’s Rehabilitation Journey – June 19th – Mid November 2012

photo[2]Steve’s Rehabilitation took many months and included both Medical Rehabilitation and Physical Rehabilitation.  The first stage of rehabilitation was medical and involved removing Steve from the respirator and treating a very severe flesh wound.  Steve would have to endure three hours of physical activity each day to be accepted into the Lovelace Rehabilitation Program in Albuquerque.  After months in the ICU/CCU, Steve was weak and had lost an enormous amount of weight and muscle mass.  Steve has long been a student of nutrition and this knowledge served to be a big asset to his recovery.  It didn’t take very long for Steve to gain strength and endure the three hour objective.  The flesh wound began to improve and it only took a couple of weeks for Steve to be accepted to Lovelace Rehabilitation Hospital despite the continued flesh wound issues.

Steve worked diligently on improving his physical abilities and strived for independence while at Lovelace Rehabilitation Hospital.  KH_Albuquerque_EXTE12D4B91Because Steve has always been a free and independent spirit who has always had intense determination at whatever he sets out to achieve, we knew he’d become engaged and involved.  Steve began working many hours each day on restoring his body and gaining motivation and confidence in his abilities.  Steve’s T4 spinal cord injury resulted in paralysis below the chest.  Without having core muscles, tasks like moving from his bed to his wheelchair took enormous amounts of effort and lots of work.  He worked very hard, but in the end the flesh wound that had plagued his recovery since the beginning didn’t show any signs of recovery.  Steve was informed that the wound had progressed and was categorized as a “Stage-4” flesh wound.  Steve would have to have “flap” surgery to repair the wound.  This surgery would require Steve to remain flat on his back in a sand bed  for six weeks directly following the surgery.  He would not be able to even sit up to eat or drink.  He had worked so hard to regain his physical strength, the thought of how six months of bed rest might set him back was very disappointing.

Following the “flap” surgery Steve was transferred back to an acute care facility where he remained flat on his back for six weeks.  We were concerned that six weeks of bed rest would take a toll on Steve emotionally as well. To this day, I’m not sure how he did it. Many of these days were extremely challenging, but he made it through.

Following his six week stay in acute care, Steve returned to Lovelace Rehabilitation Hospital to refresh his skills and regain physical strength.  Steve returned home with his family in mid-November — Just in time for Thanksgiving.

Excerpts from the Facebook “Prayers For Stephen” throughout Steve’s journey through rehabilitation follow below. You can join the facebook group by going to http://www.Facebook.com/groups/stevesrecoveryroad and requesting membership.

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Diane’s Facebook Post – June 29, 2012 – The Road to Rehabilitation  – Today we will begin a new chapter in my brother’s recovery. He is eager, motivated and continues to have a strong desire to regain his strength and participate in aggressive rehabilitation so he may return to his life as quickly and independently as possible. There will be an interim step in the process that will enableIMG_1281 Stephen’s lungs to recover more fully. This will put him in a far better position to benefit from the long hours of physical rehabilitation he will have access to. It is easy to tell that he is eager to be moving forward and has become bored and restless with remaining in a hospital bed. Anyone that knows Stephen wouldn’t be surprised by this. The hospital he will be transferred to today is Kindred Hospital in Albuquerque. It is a hospital that specializes in removing tracs, rehabilitating lung function and providing a moderate physical rehabilitation program without interfereing in our ultimate goal — getting him to physical rehabilitation. As the medical chapter of my brother’s recovery comes to an end, I feel far more confident that he is stable and ready. I don’t have the same concerns I did before about his medical status. His lungs are better and he has been able to tolerate many hours of sitting upright now. Today we will assess the level of care provided at Kindred. We will see how equipped the staff is there to care for a patient that is completely incapacitated. My hope is that we will have a good experience at Kindred today and that we leave there with confidence, knowing that Stephen’s recovery will continue to move forward. This fresh start will be good for my brother who will now take on the responsibility of advocating for himself and becoming the champion of his own rehabilitation. He is capable and I have a great deal of confidence in his attitude and ability. I remember saying early on that my brother has a strong will and incredible determination. I prayed that these amazing qualities would re emerge has he woke up and realized the lifelong challenges he would face — They have indeed….thankfully! — Lov d

IMG_1282Diane’s Facebook Post – July 3, 2012 – Painful Separation –  And now comes the hard part for me…..I have been here in New Mexico with my brother and parents for almost three months now. I have counted on my son and husband to understand our circumstances. Both have risen to the occasion and the support I have receiced from them has been unprecidented. Especially my husband who has stayed up until the weee hours of the morning on many occasions. With a son returning to college and many other responsibilities that have been completely neglected, it is time for me to go home for a brief period now. Thanks to technology, I will be able to have a lunchtime SKYPE with Stephen each day.

My brother’s recovery is going very well. I no longer feel that his life is in the balance. He is in need of support from all of his close friends while he endures this interim period of “Hurry up and Wait” which is very hard, frustrating and frankly boring. I do not believe that Stephe’s stay at Kindred hospital will be a long one based on the milestones he has accomplished this past week.

During this time my parents will endure the long drive to Albuquerque almost daily continuing to make sure Stephen’s treatment plan stays on track and that the strong support and advocacy our family has been so committed to will continue. Also, I hope from the bottom of my heart that members of this group will support Myoko by helping with the children as much as possible so she may spend as much time as she can with Stephen. Myoko has been a major support to my brother through this tragedy and he has drawn positive energy and strength from her. He benefits from having her by his side, and I hope that will the strong support of members of this group, she will be able to continue to see him at every opportunity.

IMG_1279It is critical that my brother feel loved, comforted and alive at this point in the porcess. The presence of family and friends will surely create positive energy that he really needs. In addition, strong advocacy is required while he is at Kindred. It is important to stick to the objectives in a rigid fashion. Our focus will remain solidly planted on Stephen’s lung and wound issues and we should do all we can to assist him to be a comfortable as possible as he deals with the boredom and frustration he is facing. His wound only enables him to be up and in a chair for two hours per day………

Kindred Hospital is a “light” rehab facility that deals speciafically with lungs, wounds and other ailmemts that take time to heal. There are many older and, quite frankly scary looking people there that are very sick. I wonder how my brother feels when he looks around at others being treated at this facility and comtemplates his own life and fate. We must do everything we can now to get him focused on the future, his bright future — one that includes returning home to his beautiful daughters and his continued strong influence as a father, son and brother.

It will be a huge challenge to get on a plane, and each time I think about it I become tearful and wonder if I will actually do it. I must constantly remind myself that I have met so many amazing people and close friends who love my brother. I trust that they will do all they can to devote their time to seeing him and providing the emotional support he will need to endure and prevail.

Left up to me, there would never be a good time to leave here. It is, truthfully the last thing I would do if it were my choice exclusively. This is not a temporary situation, my brother’s injuries are permement and this situation is long term. Somehow, I don’t think learning to have a good sense of balance is going to be at all easy for me. I’m certain that this lesson will be heartbreaking and filled with tears, anxiety and painful moments away from Stephen and my parents who have provided m e with the support I’ve needed — I have to try, at least for a week or two…….Prayers for Emotional Endurance Today….Lov d

IMG_1280Steve’s Facebook Post – July 7, 2012 – Progress at Kindred – Steve signing in again… I am moved by all of your responses which give me strength during this extended hospital stay. Great to hear from the Caracciolos. I remember growing up with my extended family and the faith we had in the Lord. Grandma pattelena taught us strength through faith and her way of being has helped me get through this ordeal. I would like to recognize my extended family and express how much they mean to me even though we aren’t in touch.

I would like to thank all of my family and friends but especially my sister Diane who has been here from the beginning and at my bedside during the hardest times.

In the past week I have made a lot of progress by getting off Oxygen, having my trach tube removed, and eating solid foods. My struggle now is healing a wound caused by being in bed for months. This is a real struggle because it can’t be healed quickly and I might have to spend another month in bed healing before starting rehab. I feel I am ready for rehab and can feel frustrated about sitting on my ass for another month in the hospital. I am thankful for the amount of progress that has happened and I need to keep patient while I work to get back home.

Thank you for keeping prayers and faith going. It will keep me grounded through these hard times. See you in a few days, lots of love!   Steve

Steve’s Facebook Post – July 19, 2012 – Rehabilitation — Steve signing in again. Hope all of my friends and family are well. This was a big day for me, I finally made it to rehab hospital, Lovelace in Abq. Been working toward this part a long time and am ready to get off my back and start getting strong again. I am realizing what a blessing it is to have been injured with a fit body. I have lost tons of muscle and weigh what I did when I was 13 years old. The positive is I have to start rehab with being lean as now the challenge is to lift my whole body weight with my arms. Getting strong, wound healing and learning how to do the daily tasks of life are my challenge now. I want to be self sufficient as possible. I just think that a month ago I had trouble breathing and couldn’t even be on my back or my oxygen would drop. Blessed to be able to have opportunity at this life again. I can’t thank Myoko enough for being here for this transition. I feel comfortable in the new place and am hopeful for recovery. Love and blessings to all of you who have supported me, it is keeping me motivated and strong. I am lucky to have another chance. The time is now. Peace, Steve.

Myoko Facebook Post – July 24, 2012 – Rehabilitation  – Steve, we all know this but I have to say again, YOU are AMAZING! I am so inspired by your motivation and determination. I can’t believe how much you did in just a few hours of therapy this morning, so many firsts! Navigating the wheelchair up a curb and ramp, opening and moving through heavy doors and then getting in and out of a car. WOW! So much to learn and you are eating it up and asking for more. It’s fortunate that you are an athlete and are adapting your knowledge of movement, balance and coordination to all of these ‘new’ activities. You are able to progress more quickly than someone who is less comfortable in their body and see results from your efforts. Keep up the great work!!!!

These girls love and miss their dad in a big way!  Fortunately visiting the hospital is becoming more normal for Adeline and Cecilia and they spend our visits flanking their dad, chatting away, filling him in on their busy lives.  We spent our visits on Saturday and Sunday playing crazy eights and old maid, making books and of course, enjoying food together. For much of the visit they hold their dad's hand, are in his embrace or are gently rubbing his arm.  It's so sweet to watch the girls and their dad filled up by their precious time together.
These girls love and miss their dad in a big way! Fortunately visiting the hospital is becoming more normal for Adeline and Cecilia and they spend our visits flanking their dad, chatting away, filling him in on their busy lives. We spent our visits on Saturday and Sunday playing crazy eights and old maid, making books and of course, enjoying food together. For much of the visit they hold their dad’s hand, are in his embrace or are gently rubbing his arm. It’s so sweet to watch the girls and their dad filled up by their precious time together.
Steve’s Facebook Post – August 26, 2012 — Preparing for Surgery and Six Weeks of Recovery – Hi, it’s Steve. Hope everyone is well, sorry I haven’t updated in a long time. Things are well here at Rehab in ABQ. I’m finally gaining some muscle and can do the basics for daily living on my own. My spirits are high considering, and I am accepting my new way of life. I am blessed to have the support of my wife, children, parents, family and all of my friends. This has been a spiritual journey as well as physical to regain my strength. The next step in recovery is to have surgery on the coccyx wound that it slow to heal. I have met with a plastic surgeon to discuss this skin graft surgery. In order for that to go well I need to have a temporary colostomy to maintain cleanliness of the wound in healing. Next appointment with the doctor is Sept. 7. Right now I’m working on raising my low protein levels which need to be increased before surgery can take place. Once the surgeries have been completed, I will have 4-6 weeks of bed only rest in the hospital. My concern is losing strength that I have gained during this rehab process and that I will have to return to rehab after the bedrest to increase my strength again. Unfortunately this is a long process, but I do see the end in sight and hope to be in my own home by Christmas. I truly appreciate the faith that each and every one of you have had for my healing process. I feel the love and am blessed to be here to experience life anew.  Peace, Steve
Myoko’s Facebook Post – Septermber 18, 2012 – Two More Surgeries – Friends, please keep Steve in your thoughts and prayers during this big week. Steve has been fasting since Saturday night in preparation for (temporary) colostomy surgery today and skin graft tomorrow. Following these surgeries he will be on strict bed rest for 4-6 weeks followed by 2 weeks of recovery. He’s looking at the surgeries as one step closer to home and is as courageous and strong as ever. Prayers, healing thoughts and good vibes have supported Steve through this journey and I know they will continue to carry him in this next chapter
The colostomy surgery was peformed by Dr, Syme and the plastic surgery for the stage 4 wound (bed sore) was performed Dr. Tsao Wu at Lovelace Downtown Medical Center
Diane’s Facebook Post – October 31, 2012 – Post Surgery – The Final Lap of Rehabilitation — Hi All – I know it’s been quite some time since the group has been updated. If you can believe it, someone actually stole Stephen’s iPad so he hasn’t been able to communicate virtually. I talk to Stephen almost every day and I can tell you that he’s doing remarkably well from every perspective considering having spent 6 1/2 months in the hospital. Recently, several of you have reached out to me for an update…..First and foremost, thank you for your ongoing thoughts and prayers. Together we have joined together in community prayer and I am convinced that together we have shared a miracle. Not only because my brother is recovering physically, but because he has remained emotionally centered during the most difficult part of his journey.Since his flap surgery, a surgery that repaired a flesh wound he had on his lower back due to the amount of time he’s been in bed, he has had to remain flat on his back for four weeks straight. This period was followed by a period of “seating protocol” a week during which he was only able to get up for very limited periods of time incrementally from day to day.This past Friday, Stephen was transferred back to Lovelace Rehabilitation Hospital where he will stay for the next two weeks. During this time, he will work on final preparations including physical rehabilitation and refreshing the skills he will need to return home. Mom and Dad (and many incredible friends) have spent the past couple of months working very hard to prepare Stephen’s house for his return. They have made significant modifications that will enable Stephen to live independently and reclaim his life in Santa Fe.These last two weeks at Lovelace Rehabilitation Hospital is the final approach to the hospitalization finish line. Our family is so very grateful and excited that Stephen will return home just in time for Thanksgiving!!! — Lov dSteve retuned home with his family just before Thanksgiving.
The recovery from the flap surergy and the seating protocal took place at AMG Specialty Hospital in Albuquerque.