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We are not alone.

5/19/2016

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Our days now included the meal schedules. David was placed on a soft diet such as applesauce, yogurt, thickened water, gelatin, etc. He would gradually be introduced to puree and then solids. I fed him every meal and monitored that he would swallow every bite. One time, his right cheek got swollen and we figured it had been an allergy reaction to possibly pineapple and was relieved when it subsided. He was handling the food so well that was upgraded to puree in no time.
The hardest task was convincing Eddy that David wasn’t ready for a “Malta” and chicken empanada or the ham croquettes which Ana Carolina would bring him from “la cafeteria – The Sandwich King”.  The only outside food that got the approval was the “flan” that Jorge insisted he had to have when he was in town. We all hoped that David would continue to improve so that he could enjoy the traditional holiday thanksgiving dinner, which was approaching quickly.

During this time, the Psychiatrist stopped 2 prescriptions including one that is prescribed for Parkinson, which could cause hallucinations. We were moving forward.
Family and special friends visited and brought the joy, the stories and special treats. My sister Noemy and brother in law Hector would bring me delicious lunch and coffee and a tray of special treats for the nursing staff when they were visiting. As it was their tradition, they would coordinate and gather all the children, aunts and cousins to have dinner together at favorite spots in the area.
Other special family visits such as Uncle Mayito and Tia Tere, Uncle Ruben, Manny and Aunt Flor would witness the constant progress.
As we celebrated that my sister Gaby would be close to us as she settled in from Orlando to her new place, about 20 minutes away from Miami, it broke our hearts to say goodbye to CNA Norma who was leaving the nursing home. It was a roller-coaster of emotions. We felt so blessed surrounded by so many beautiful people who helped us in our journey.

One afternoon, as I returned from a coffee brake to watch David in the physical therapy room, therapists Julissa and Harold mentioned that David had been fighting with them and explained that confusion and agitation was part of the recovery process from a severe TBI.

Agitation after TBI is an excessive global psychomotor activity, inappropriate to the environment, and may be a manifestation of delirium but frequently exists independently of it. It occurs in up to 70% of TBI patients and it often stems from disorientation and over stimulation. It can be very challenging to manage these agitation episodes. Because it may result in physical harm to the patient, it becomes very stressful for everyone involved. Before medicating an agitated TBI patient, efforts are made to eliminate over stimulation such as limiting visitors, limit lighting and in extreme cases - physically restraining the patient if necessary. After an episode, which can last a few minutes to a few hours, the TBI patient becomes exhausted.
 
The next morning, as I was feeding breakfast to David, he started yelling. He was having an agitation episode. It became frightening and frustrating. He still had food in his mouth and I quickly removed it hoping he wouldn’t close his mouth and bite me or choke on it. He kept yelling and moving in his bed. I tried to hold him to offer comfort but all of his body was shaking and moving. It was hard to watch him battle this agitation episode on his own. I knew I had to wait it out with him.

Ana Carolina came in a few minutes later and saw my agony. She insisted I leave him with her for the rest of the day so I could get some rest at her place. Nurse Rose came in and insisted on Ana’s proposal and I left. I prayed and cried all the way back to the apartment. There was no room for setbacks. I kept asking myself how long would the agitation phase last and what would be the ramifications? Masses were being offered. People who had not prayed in years were now doing so for David. We were not alone. For the next few weeks, I would just sit next to him and hold his hand - when it was possible - and waited for it to stop. It reminded me of the storming episodes back at the hospital. They finally became less frequent and then one day it ended.

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A few nights later, as I prayed for God's will to be done, an overpowering emotion of us moving back home soon - got a hold of me. I knew God was in charge and because he makes every - and any plan perfect, I would wait for the signs and not become anxious.

David started moving the right leg more often. The removal of the feeding tube was being considered as he continued to tolerate the food and kept gaining weight.

Now that David was eating, I learned he was able to travel out of the nursing home to the mall, a park or anywhere we wanted with a special permission. I arranged a visit to the transportation office to get the paperwork and David’s ID in order to do so. I was thrilled just imagining how he would react. Our first trip would be to Eddy and Ana’s apartment and then probably to church. He would like that.

The physical therapy sessions became very productive. David could follow all the commands, such as moving his trunk forward and backwards as they requested. Stacy, the speech therapist took David on a date to the vending machine so that he would count the amount of money he needed to buy a chocolate chip cupcake and an orange soda as part of his cognitive therapy and food texture upgrade. He enjoyed every minute of it.

One afternoon, as we waited outside on the sidewalk for the transportation van to pick us up, after a visit to David’s primary physician’s office, a young man named Raul passed in front of us on his bicycle. All of a sudden he turned around and proceeded to tell us that the Holy Spirit had asked him to turn around and pray for David. The prayer was so powerful that it had to have been guided by the Holy Spirit. He then mentioned that David would walk and talk and left. Not even 2 minutes later a gentleman passed us by and as he blessed David he said that David would be OK. The Lord was speaking to us. We were not alone.
PictureJohn came to watch B-Boy videos with David.
Hector Luis and John came to see David and watched B-boy videos with him. Before leaving, Hector Luis placed his watch on David’s arm. David loved watches so we knew this was a positive stimuli. He kept staring at the watch until he fell asleep that night.

The following evening I went to a healing prayer at church. It was powerful. The message was about the Lord’s promise to take care of our children and that He is always with us.


We all have days full of sorrows and distress. We can choose to allow these moments to twist us into darkness and burden others around us or choose to allow God to give us the fortitude to serve others so that His Love can dwell in us. All we have to do is ask. He will never forsake us.

(Isaiah 41:10; Deuteronomy 31:8; Matthew 28:20)

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Well Played.

5/2/2016

1 Comment

 
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There was a lot of preparation for the swallowing test. Speech therapist Stacy trained us on exercises to practice several times a day to get David ready. If he would fail the test – we would have to re-apply after 3 months for the next one.

We would talk about how much he had practiced during high school for basketball, baseball and football and how, “practice makes perfect” so, every day we practiced and practiced and practiced some more.


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Swallowing is controlled by the brain, which sends signals to muscles in our throat and esophagus. With neurological problems such as a brain injury, patients may have difficulty initiating and executing a swallow. With Dysphagia, which is the medical term for difficulty swallowing, patients may choke on their food and/or experience aspiration.  Aspiration is the medical term for inhaling small particles of food or drops of liquid into the lungs. Aspiration may occur without anyone knowing if the amount of food or liquid is small (Silent Aspiration). The first sign of aspiration may be trouble breathing or signs of pneumonia.
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Not only did we hope David could taste food again, we learned that the muscles involved in the process of eating could improve David’s speech ability.  Also research concerning nutrition and its relationship to brain function, cognition, learning and social behavior confirmed that nutrition has a direct effect on neurotransmitters which are important in sending messages from the body to the brain.
The swallowing test was a very significant milestone in his rehabilitation. I arrived at the nursing home very early the day of. When I got to David’s room, several CNAs were already getting him ready. Arrangements had been made with transportation and all the paperwork was signed and prepared for the hospital staff. After all the practice, the day had arrived. Excitement was in the air. They wished us luck and off we went to Jackson Memorial Hospital. I prayed that David would not get agitated and instead would remain relaxed and focused on swallowing.

I signed him in at the lobby and waited. It felt like an eternity before they called us to a window and after I explained the reason for our visit, the attendant mentioned that David was not on “the list”. My heart plummeted. The lady said David could not be seen and that we had to leave. I told her I had received a call confirming the appointment and I insistently begged her to check with a supervisor.

As she turned around, I wanted to cry but I had no time so I turned to prayer instead. I didn’t stop praying until the attendant came back to the window. I couldn’t read the decision by looking at her so, as she got set to tell me, I just held my breath ready to accept God’s will. She then proceeded to explain that there must have been a mix up because David was not on their list but that the pathologist was indeed waiting for him upstairs. I was so happy I had not left at the first obstacle but persisted on the task instead. I walked to the elevators as fast as I could as if there existed a possibility that someone would change their minds and turn us back.

The hospital’s speech language pathologist (SLP) welcomed us with a smile. She showed us the different textured food prepared for the test, which included yogurt, applesauce, thickened liquids and a few cookies. This would be the first time David would try solids after 4 months. I wondered how he would react. Two assistants sat David in front of an X-ray machine and then escorted me to a hidden room where I could see David through a glass window.
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There was a monitor, which would make David’s throat, the pharynx (back of mouth and throat) and the esophagus (a hollow tube of muscle extending from below the tongue to the stomach) visible on X-ray. We would see it live, as it would be occurring.

The SLP began the test by introducing yogurt and as she showed David the spoon, he opened his mouth indicating his brain automatically responded to the action expected. I could see the food on David’s tongue. The radiologist in the small room said, “it was not good”. He had to propel the food to the back so that it would quickly pass through the pharynx and then into the esophagus or swallowing tube.

During my children’s school years sports events, I was their most spirited cheerleader.  Now I felt like shouting, “go David you can do this”. The suspense was rising when all of a sudden David pushed the food to the back and down went the yogurt. We were all relieved. Then he tested for the applesauce, the thickened liquids and the cookies. Like a star, he tackled each sample and hit goal bite after bite. They congratulated us and off we went to share the victory.

I kept hugging and cheering David as we waited for the transportation van to pick us up. A whole new world had just opened for him. Back at the nursing home everyone: the nurses, techs, Ms. Martin, Carmen the nutritionist, Mr. John, Idalis and her son Andy, Ruben and others congratulated us as they would hear the news. He would start by eating soft foods, then puree and gradually to solids. As David would manage regular meals, the feeding tube would also be removed.
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The order was in for the next day. A soft breakfast for Bed 1 – David Arroyo.
Unbelievable – David would have his own breakfast being served. He would enjoy the fruit of his hard work and efforts.

As I left for the evening, I kissed him good night and whispered as he slept “Well played David, well played”!

We are made strong in the Lord. He gives you the strength to stand firm and take what is yours without loosing fate.

(2 Cor 4:16-18; 2 Chronicles 15:7; Psalm 31:24)

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    Authors

    My son, David Arroyo  and I, Ana Curras, collaborate together. This is our story. Our story because we are connected. We all are. When you hurt, I hurt, when you succeed, I succeed, when you have joy, I do too. It's in our design as human beings. Our story is intended to give hope, joy, encouragement and light. We pray to be inspired by our Creator, guided by Jesus Christ, moved by the Holy Spirit and accompanied by our Mother Mary.
    We believe.

    NOTE: Bible verses referred to in each post are linked to open to the verses for your convenience.

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