Wednesday, June 8, 2016

Jun1-7 2016

June 2, 2016

Dr. Physical Therapist called me after they had had a team meeting today. He explained that he had discontinued the Meclizine, as it was too close to the Scopolamine patch Jo was already using and it had a sedative effect, which he didn’t want Jo to have. He asked if I had anything I needed to talk to him about. I told him that I wanted to get to the bottom of Jonah’s vertigo, nausea and vomiting. He explained to me that the portion of Jo’s brain, which was taken from the cerebellum, is what is causing the vertigo. The cerebellum is where we get our fine motor skills. Having his eyes work together is a fine motor skill (I don’t remember how it all works, as he explained it to me, I just remember that it made a lot of sense to me and it felt right) I have been feeling like Jo would have issues with this vertigo, in much smaller ways, for quite some time after he is home and living his life, however the worst of it would be resolved so he could progress. Doctor Physical Therapist told me that this is a common condition of patients with TBI’s. I asked him what he does to help them and he said work with them to desensitize the brain to it. Discouraged does not even come close to describing what I felt after this conversation.

This was a horrific day for Jonah!! He was incredibly sick today. As I walked onto the floor I was told he got sick several times today, with the very worst of his entire hospital stay, being at lunchtime. They had decided to stop his tube feed during the daytime and just encourage regular food intake. Jo had had no appetite and ate very little breakfast, which he lost during the first go-round of physical therapy. At lunch he dry heaved and dry heaved! Nobody knew what to do to help him. Most of the staff was talking about how hard it was for Jo and how hard it was to watch. My heart just sunk!!

I walked into Jo’s room to find him lying very still. He was flushed and said his head hurt really bad!! He said it was a 4 or 5 on the pain scale, so this was pretty bad for Jo to say it is more than a 1. I thought maybe his nurse had just given him his pain med and it hadn’t had a chance to kick in yet, however she said she had given him his pain med about 3 hours before and it hadn’t helped as it usually did.  She told me she would give him some Tylenol. I asked Jo if he wanted a cold rag for his head and he gave me a “thumbs up” signal. I asked him if he was hurting anywhere else and he said his throat was hurting. My daughter Chandler whipped out her phone flashlight so we could look down his throat. It was slightly red. He was somewhat horse too. His spirits were down. All day long I kept telling Heavenly Father that I was laying Jo at His feet, that I KNEW He knew exactly what was wrong, how to fix it and that I knew He would finish what He started in healing Jo. My job was to believe, and love and support Jo. I prayed that He would give insight and inspiration to those with the knowledge and power/license to do what needed to be done.

Jonah had told us that his feet and hands were cold. He had been rubbing his hands back and forth on his soft blanket and then wrapping them around the edge of it. We took his slipper socks and support socks off and rubbed his feet down with lotion and then heated up washcloths in hot water and wrapped his feet in those and then a dry towel. We did the same to his hands. His feet got cold again quickly so I decided to go get some of those blissful heated blankets. Dr. Physical Therapist was standing at the nurse’s station when I came up to ask the nurses for the blankets. He looked up, greeted me, stopped what he was doing and said he would walk down to get me a blanket out of the warmer because he wanted to share his idea with me. He told me that he had decided to try a different type of anti-nausea medication. This one dealt with helping with bowel motility. This medication would help move his food, faster, to his upper intestines. He felt Jo maybe had a bowl motility issue. (Okay, I didn’t see that one coming at all, however it sounded really good.) He said that if Jonah didn’t improve 100% by morning, he was going to try another medication that was a derivative of marijuana, which is used by cancer patients. He said this drug would help with the nausea AND give him an appetite so he would desire to eat. I was thrilled with the chance to try something, as this was clearly an atrocious issue for Jonah and was clearly keeping him from progressing to the extent he would be capable of without the nausea and vertigo. I was told Jo had already been given his first dose and they had started his tube feed for the night. I had to leave to take Holland to swim team practice. My son-in-law, Michael came to sit with Jo.

Tom and I came back to be with Jo for only about 45 minutes because it was time to put Jo to bed. Things were so-far-so-good with keeping the tube feed down. Jo’s CNA for the evening was a sweet girl with a warm smile and she was eager to help Jo in whatever way she could. 

June 3, 2016

MIRACLES, MIRACLES, MIRACLES!!! Jonah kept his tube feed in through the night, NO VOMITING!  He went to all of his therapies and never threw-up. He ate a portion of his breakfast, lunch and dinner, NO VOMITING!!!  The inspiration Dr. Physical Therapy was given, to try the new drug, was amazing to me, as it is a direct answer to my prayer that someone with the knowledge and power to administer the treatment would receive a prompting and administer the solution!  Jo was in good spirits and I was told he was very talkative today. The nurse told me they really worked him hard in physical therapy.  He was a pooped out boy by the time we saw him this evening. As we sat to talk with Jo he started telling us that there was a Naval Captain that came into his room at the other hospital who was really mean. He said that he was making fun of him for throwing up and being a wimp. I asked him to describe him to me because I never saw anyone I didn’t know enter his room. He said he was Tom’s age, maybe a little older. Jo became a little upset again as he was talking about it. My son-in-law Michael said that Jo talked to him about it too, when he came to visit. We have all asked Jo if he had a name and if he was part of the hospital staff-doctor, nurse, aid-or someone off the street that just wondered into his room. Jo didn’t know, but he said that’s why he doesn’t want to be alone at the hospital. It just makes me freaking mad and I want to find this person, and I wonder too if it is more a spiritual battle than physical.

June 4, 2016

Our air conditioner in our home has not worked for a full week!! Of course the temperatures have hovered right around 100 degrees the whole week. It has been quite miserable trying to sleep in the heat, however both Tom and I have been so overwhelmed we have not talked about what to do, except I asked him if he knew who I should call to see about the repair. Last night was exceptionally bad because there seemed to be no relief except for Tom except for him to get his garments wet and lie directly under the ceiling fan in our room, which meant laying at the foot of our bed. Tom got up early to get to work as he has been running behind on his jobs. As I prayed this morning, I asked for help in knowing who to call for our air conditioner. As I was getting ready, I received a name of a man in our ward as the person to call, whispered in my head. I argued that this man is a fireman, why would I call him over our air conditioner. Then a remembrance of a conversation we had had a few years back came to my mind, in which we had discussed the renovation of their home. I couldn’t remember if he had told us that he was the one that put in his heating/air unit or if he had a friend that had done the work, so I text his wife to inquire. She text me right back telling me that it was her husband and that she thought he could go look at the unit in a few minutes. Within an hour her husband had been over to our home, left again to buy the part our unit needed, replaced the part and had cool air blasting through the vents to cool our home!!! I called him to ask what we owed him and he said the part was only a few dollars and that I could make him a pan of brownies. Sheesh, what a doll!! I stopped by Tom’s shop to tell him what had happened and he rehearsed that he had gone to Home Depot first thing to price out a new unit and was trying to figure out how to finance it and then when to find the time to put the new unit in! His relief was shown physically as I watched his shoulders relax and his breath release. What a miracle!!!

I went grocery shopping with my daughter Austin and her children. I was shopping with only a quarter of my brain, as my thoughts were on getting to Jo. As we were checking out I asked the clerk to charge me for some bags of ice and then I reminded myself that I needed to remember to go to the freezer to grab those bags on my way out. As soon as that reminder entered my mind, it was gone again. I paid and loaded my bagged groceries into the cart. Just then, my 7-year-old grandson said, “Jed and I will go grab the bags of ice for you grandma.” I was so so happy that Maddox had remembered the ice, because I sure hadn’t and we would have just had to do without because I would not have gone back to get it, I needed to get to Jo. This was a sweet tender mercy. I hate drinking water without ice, it is what I want just before bed and to have on my table next to the bed and I wouldn’t have gotten back to the store for two more days. This is just proof to me that the Lord cares about every, “Jot and tittle” of what we care about.

By the time I got to Jo today it was 6:00 PM. I felt terribly guilty for making him wait while I worked on projects, which needed to be done around the house!!! He had had a good day; again there was no vomiting. He was still wearing the bib they placed on him to help keep his clothes clean while he tries to feed himself. He was sitting at a near vertical position with his head pushed forward by the pillow it laid against. I asked him if he was comfortable, it sure didn’t look comfortable. He told me he was good and that his head was hurting a little. I asked if he wanted the bib off and to lay back some. (It always makes me nervous to move him or his bed at all for fear of making him violently ill.) He pulled on the bib and I removed it. He then said he would like to lie back a bit. I asked him if he was ready for me to push arrow on the control to lower the bed back and he gave me a “thumbs up”.  He never complains, I have to pull it out of him to tell me what he likes, dislikes or wants.

Jo was struggling today with his mood. His CNA told me she had asked him if he was having a hard time. She told me that when she asked him, he turned his eyes downward, and he became teary. She said that Sundays were a difficult and boring day because there isn’t much going on in the unit as far as therapies. She said she told him it was okay to be sad or mad or frustrated and that what he was experiencing was difficult. As I watched Jo rub over his scars on his head I asked him what he was thinking. He told me, “Home”. I told him he was going to be home before he knew it and that it had only been six weeks since the accident and he had made huge strides. I asked if he minded if I told him a little bit about his accident, the surgeries, the doctor reports, and the miracles given. He gave me a “thumbs up” signal, so I began. I told him that if it began to feel like it was too much, he needed to signal me and I would stop. I watched his expressions and body language carefully as I shared with him what The Brilliants had said regarding his initial prognosis. I told him that he had already done the opposite of what we were told he would do. I said, “The Brilliants genuinely felt that you would not even be out of your coma at this point”. We told him about our struggle in going to the Lord to ask for his will in his situation and the relief we felt as we knew the Lord’s will was for him to live and be made whole. We shared with him about the outpouring of love and support we have experienced and people from all over the world have shared. We told him that we have learned so many wonderful things about him, as people have shared their conversion stories, and stories of his service to them and how it changed their lives. He was genuinely surprised and baffled at the severity of his injury and happy to hear that he has been protected and healed and has had a positive influence on others. I pray that Jo will feel the love of our Savior and the peace that surpasses all understanding as he continues down this difficult road to recovery.

His appetite is not great and the fact that all of his entrees have to be pureed does not help! He ate his mashed potatoes and gravy, yogurt and a few sips of Mountain Dew and left the pile they called chicken, untouched. He told me he would really love some plain old water. He told me his head was hurting. His nurse came in to give him his anti-nausea, and med for his headache. I ran washcloths through the cool water of the sink and swung them back and forth through the air to cool them and then placed them on his head. He can’t have ice on his head because his brain is only shielded by a thin sheath and skin, so a cold washcloth is all he gets. Every few minutes I lift the cloth off his head and swing it in the air again to cool it and place it back over his head.

It was getting to be the time I needed to leave. I plugged Jonah’s phone into his charger and left it by his arm. I told him to call me whenever he wanted. We practiced. He lifted his phone and pushed the round button on the bottom and said, “Siri, call mom!” It took a couple of tries before Siri understood what he had asked and then we heard, “Calling Mother.” We both waited to hear my phone ring. I answered and said, “Hello?” Jo answered, “Hi Mom!” We smiled at that. I kissed him on his forehead and cheek, hugged him and left the hospital to go home to make our dinner, as always with a heavy heart. We ate by 9:00 PM and then ran back to the hospital to tuck Jo in! I was back home again by 10:00 PM and opened my lesson material to study for the Sunday School class I teach. It’s been a long, good and hot day! I am so excited to sleep in a cool house!!!

June 5, 2016

I left my phone at home during church and when I got home at noon there were four missed calls and two messages from Jo!!. It’s exciting and made my stomach flop as I listened to his message. The first one was just the sound of breathing; the second was, “Hi mom, it’s Jo. When are you coming? I love you.” Tom had just a couple of short interviews and then we headed over to the hospital to give Jo the Sacrament (the bread and water). Tom decided since we were there for the Sacrament, we would go ahead and have a little testimony meeting with Jo, since we all were fasting and praying on his behalf.   Tom told Jo how much he loved him and that Jo has changed Tom’s life forever. He told him how he came to know the Lord’s will on behalf of Jo and how grateful he was to know that the Lord’s healing power is on the earth today and He is performing miracles today, as He did when He lived on the earth. He told Jo that every part of his healing journey has involved the Lord and that the Lord has been in control and Jo will be made whole through a lot of work and fight. Tom also told him that he believed that one of the reasons Jo had been healed is because the Lord honored the love, faith of his mother. Jo listened intently. Tom and Jon also gave Jo a beautiful blessing.

Later in the afternoon Jo was asked to record a video to send to his best friend, serving a mission in Chile. Jo told him how much he loved him and that the Lord was watching over both of them. He said that the Lord loved them both and would continue to heal him. It was wonderful to hear Jo verbalize what he had understood from those things Tom and I told him of his injury and the resulting miracles, which have transpired on his behalf.

The nurse told us two wonderful things today: Jo may be getting his stomach feeding tube out and they would like us to come have family dinner at the hospital either this next Sunday or the Sunday after. I asked Jo what he would like to have for dinner and made a few suggestions. He decided he would think about it. Jo told me he was only going to be in the hospital for another week and then he was going home. I just agreed with him and told him to work as hard as he was able. It just makes my heart squeeze. I plead with the Lord to help us both with this!

As I sat there talking with Jo about how excited I was that his stomach tube would be removed, he told me that one of the nurses in South Carolina (the place where he served his mission) had come into his room, at the other hospital, with a small red bottle of beer, which had a rooster on it. The nurse added hot sauce to the bottle and then sucked the contents into the large syringe they use to administer medications into his stomach feeding tube and then pushed the contents into his stomach. When I asked him if that scared him he said, “Yes, because I couldn’t say anything. That’s why I don’t want to be left alone.” I am glad that he spoke about the nurse being from South Carolina because it helped me believe that this experience was probably a confabulation / memory error (the brain makes up a story to make sense of a gap in memory). We will probably hear many of these stories as the months go on. Jo saw things happen as he went in and out of consciousness and his brain is trying to piece the stories together. Jo truly believes it happened and it is disturbing to him. On the other hand, I have read too many creepy stories about things like this happening in real life, so I can believe it could have happened. I am going to hate this part of his recovery because I don’t like the thought that Jo thinks he has been abused or mistreated! There are just so many issues to confront and process with this injury; it can be very overwhelming and so, so sad at times.

We left the hospital to take a nap (one of the best parts of Sunday) and have dinner. The siblings took turns going to the hospital to spend time with Jo. Jo asked the last group to tell Tom and I to come quickly, as he hates waiting for us.

June 6, 2016

This is my first day watching Jo in physical therapy, at this hospital. Up until now The Brilliants had asked that we not be at the hospital until all of Jo’s work was done for the day. Jo has begun to show signs of depression and now The Brilliants believe it is better to have more visiting, not out of control visiting, but a-couple-people at a time visiting. Jo has always been a socialite! He was always out visiting with groups of people. Our family is huge, so there has been lots of people around Jo for the majority of his life. It is no wonder to me that Jo has not tolerated the large amounts of time alone in his room in between his therapies.

Heather Saige and I were buddies today, she is the only one that doesn’t have a huge social calendar and she had also decided she was going to take a break from competitive swimming this summer. She and I gowned up and entered Jo’s room. He had had another good night. This is day four of not throwing up!! Jo was already dressed and had eaten his Cream of Wheat, which he hates!!  He asked me if he felt hot. I laid my gloved hand on his forehead; it felt cool. I asked if he felt sick. He said he just couldn’t figure out why he feels fine and yet like he has a flu. I asked if he felt achy and he said he is just generally uncomfortable all over and has a constant ache in his head. I asked if he wanted a cold cloth on his head and he said that would be great. He also told me that he is experiencing pain on one side of his PEG line in his stomach, which increases in intensity when he sits up or moves. I asked the nurse to come in and talk to him about it. As she was talking to him, it was apparent that he had already talked to her about this. She asked him what the pain was, on the pain scale and Jo answered with a two. She said she believed it was “referred pain” from the PEG and said she would mention this issue when she met with the doctor later in the morning. I also asked her about Jo’s head pain and she said asked Jo if he wanted the Fiorinal. he thought that would be good. As the nurse was crushing the pill and stirring it up in a water solution to be syringed into his PEG, I thought of his stomach pain and that it might be coming from the aspirin in that medication being placed on a nearly empty tummy. I wondered if they were still giving Jo an acid reducer and asked the nurse to talk to the doctor about that.

Physical Therapy came in to get Jo while we were in the middle of this conversation, to take him to the gym. Jo was placed in his electric chair and he drove it down the hall to the room. The therapist helped Jo from his chair to a sitting position on a padded table. The therapist told Jo to sit up straight and Jo straightened his body, although his head was hung in front of him. The therapist told him to pull his head up and look straight ahead. As he moved his head and body into position his hands and fingers turned white around each joint from the pressure and weight of holding his body in place. His arms shook with the strain. Sweat beads formed across his forehead, cheeks and upper lip. He grimaced as he lifted his head and held it in place. Next he was lowered onto his back and then to his stomach. He was instructed to raise himself to his elbows. His body shook with the effort. His stupid helmet was a constant nuisance, falling forward into his eyes and to the side of his head. The strap moved from under his chin to across his lips and mouth. He had no ability to fix the issues. I walked over and held his helmet in place and blotted the sweat from his face. Next he was instructed to bring his knees forward and under him so he was up on his hands and knees. His body moved uncontrollably from the tremors in his muscles from the strain. My body was tensing with his and I realized I was holding my breath. I reassured him that he was doing so great and that he is a ROCKSTAR!!!!  Finally he was moved to another sitting position. He was exhausted now. There was blood on the mat and apron of the therapist because Jonah’s elbow wound had torn open. A padded bandage was placed, however due to the sweat on his arm, it would not stick and ultimately landed on the floor. The therapist asked if I had seen him stand and then instructed Jo to place his hands on the therapist’s shoulders and push himself to a standing position. He did it as the therapist grabbed each side of Jonah’s waistband on his shorts and pulled as Jo pushed his feet as though they would go through the floor. His face held a grimace again and he was turned to sit in his electric chair. He no sooner had been seated and he started throwing up; He just wretched and wretched. Heather Saige and I used wet paper towels to wipe his face and hands as the therapists helped hold the blue emesis bags to Jonah’s mouth. When he had calmed enough, he drove his chair to his room. His occupational therapist came in, as Jonah was throwing up, and helped. She said, “Good thing occupational therapy is next and it’s shower day!” Yep, good thing, he had vomit down the front of him and pooled in his lap. I tried to wipe up the most of it with the paper towels. As he got to the room I kissed his face and said, “You are so brave!!! I love you!!!” I walked downstairs, collapsed in my car and cried. I cannot tell you how hard it is to witness your baby struggle so badly!! I plugged in my iPhone to the AUX cord of my car , turned the volume up to drown out my thoughts and flipped to the song, “In the Eye of the Storm”. The thump of the even beat of bass calmed my breathing, as the words reassured me that I have no power in this, but GOD does! He is in control and I have to lay Jo at the Savior’s feet. This is Jo’s sacred walk with his Heavenly Father and He knows how to succor him. This is vital for Jo, so I need to let go and let God!!

Heather and I left for the other hospital to obtain the records needed to apply for Social Security Disability Benefits. I have an appointment to apply for Jo in a week or so. I had signed a release on the day Jo was transferred to the rehab center, however when I called Medical Records to see if they were ready last Friday, they told me they didn’t have the release in his record and that sometimes they don’t get the release when it is sent from the various patient floors. The girl apologized and asked for my email to send me a release. She instructed me to bring it to the bottom floor of the new campus and walk it in to Medical Records. When I walked into the office I approached the girl at the front desk and told her who I was, what my situation was and what I needed. She asked me if Jonah was under 18, my stomach sank and I thought, “Okay, here we go”. I felt the tears form at the corners of my eyes. A woman who had been working at a desk behind the woman talking to me got out of her chair and inquired about what was going on. The woman asked me if Jonah was able to sign a release and what his situation is. I told her that I didn’t know if he could adequately sign. As I continued to talk to this new woman, she showed great concern for Jo and then showed empathy for me and what I it was I was trying to do. She told the front desk girl that she would take the release to Risk Management and ask them what to do. She opened the door and asked me to follow her down the hall. I explained to Risk Management that I had been the one to sign all of the “Consent to Treat” for all of Jo’s procedures and I explained that I needed to try to get him onto disability because my insurance was not going to be adequate for the medical needs Jonah is going to have. Risk Management was wonderful and told Medical Records to document all of this and release the records. Thank you! Thank you! Thank you! I completely understand the privacy laws and knew they could make this incredibly difficult for me to do what I needed to do, instead I felt heard and understood. Now tears fell in gratitude! On the wall next to the chair I waited in as the Medical Records girls discussed how to handle our situation there was a little sign that said, “Those who have walked through the fire, leave sparks of light everywhere they go!” I thought, “For sure!! Jo is already doing this”.

I went back to the hospital around 3:30 PM and walked into Jo’s room to find him sleeping; Yay, for blissful sleep. I turned around and walked back to my car.

At 8:00 PM we were finally able to get the younger girls gathered and off to the hospital for a Family Home Evening with Jonah. We asked Jo what song he wanted to sing for our opening song! He asked for his phone and began trying to search for the music to his favorite Primary Children’s Song, “Army of Helamen”. We sang together; it was wonderful to hear Jo sing with us. We then listened to a talk from October General Conference by Neill F. Marriott, “Yielding Our Hearts to God”. In this talk we learned “[The Lord’s] grace and healing are mightier than all. Truly yoked to the Savior, we can say with confidence, ‘It will all work out.’” (I love this talk, you should pull it up and listen.) We sang another primary song for a closing hymn and then Tom asked Jonah to say the closing prayer. I wanted to share his prayer, “Heavenly Father, Please bless us all with safety and that we will be comforted. Please bless me that I will be healed. Please bless the missionaries’ hearts that they will be led to those seeking truth. Please open the hearts of those who are truly seeking to know you! And that they can feel the true love of the Savior! We love thee! In the name of Jesus Christ, Amen.”

Jo said he would like Tom to stay with him through the night, so Tom ran home to shower and turn around and go back! I am so thankful for the peaceful ending to our day! Jo was comfortable when we left.

June 7, 2016

Today was AWFUL, HORRIBLE, TERRIBLE!!!! First thing this morning Jo’s nurse said, “Jo hasn’t gone to the bathroom in 3 days so I gave him this med. If he hasn’t gone by this afternoon, I will use a suppository.” Immediately, I knew this was going to be a tough day on Jo. Jo heaved his guts up in therapy this morning. He didn’t eat anything until dinner and then threw that up. There has been a family member with Jo the majority of the day. When Chandler (She is 8 and a half months pregnant) came at about 7:00 PM Jo was having a difficult time. Jo told her he needed to use the bathroom and it was imminent. Chan ran down the halls of the unit looking for someone to help when no one responded to the nurse call light. Jo had chills he was feeling so sick. Finally a helper came to pull Jo from the bed and sit him on a port-a-potty. Chan removed herself to sit outside his bedroom door. She said they opened and shut Jo’s bedroom door multiple times exposing him to anyone in the hall. She got very upset at the lack of privacy. Jo was put back to bed. Within a short time he told Chan he was going to throw up. Chan helped him grab the blue emesis bag, however the angle in which he was laying and the fact that Jo can’t move without great effort and help made it so the vomit went all over his face, neck, clothing and bed. Chan said he was choking on his own vomit and she panicked to help him. The only thing she could do was push the button on his bed sit him up. Somewhere in this mess Chan pushed the nurse call light. No one came. She again, ran down the hall to find someone and found no one. She went back to Jo’s room and began to clean him up the best she could. She pulled off his gown and cleaned his face, neck, hands and chest. She tried to clean the bed the best she could because she couldn’t move Jo. She put new clothes on him and THEN a nurse walked in. Chan was pretty shook up and called me tell me what was going on and to ask if I was going to be there soon because she was going to have to leave and didn’t want Jo alone in case this were to happen again. I was at home trying to get the girls packed for girl’s camp and I had a client that I was to talk to at 8:00 PM calling from Texas. Austin and Jon said they were going to be on their way soon.

I called the unit to talk to Jo’s nurse. The girl that answered the phone put me on hold while she went to find her. Minutes later, the girl came back on the phone and said the nurse was with another patient and could she take a message. I told her I wanted to know why there was no sitter with Jo. I told her what just happened with Jo and the toilet and vomiting episodes and that he was helpless!!!!!!! What in the heck is happening???????? I honestly don’t understand!!!!! Is my son safe? Is he frightened???? I am SOOOOO DONE!!!!!!

All of a sudden this week the doors to the rehab unit have been closed and locked. There is a little blue sticky note on the door that says something like, “Use the phone to call” and has an arrow pointing in the direction of the phone. I asked why the unit was locked and was told that there was a, “Psycho-social incident with another patient’s family member and the doors are now locked.”

Austin called Jo and told him they would be there soon. Austin and Jon brought their kids because Jo had asked to see them. When Austin got to the unit she lifted the phone; it took quite a while for someone to answer. When they answered the phone Austin told the girl they were there to see Jo. The girl asked, “Who are you?” Austin told the girl her name and that she was Jo’s sister.” The girl then asked, “How many are in your party?” Austin told her. The girl then said, “Let me talk to the nurse” and put Austin on hold. The girl came back on the phone and said, “That’s not going to work, sorry for the inconvenience”. Austin said, “Yes, that is an inconvenience (and we are scared to death for Jo that he is going to drown in his own vomit), we’ll go a few at a time.” The girl then said, “Let me talk to the nurse and she put Austin on hold for about 5 minutes. The girl gets back on the phone and said, “That’s not going to work, you’re going to have to come back another day”. Austin reminded her that the doctor had lifted the “No Visitor” rule. The girl still refused to let Austin in. Austin told her that she had already notified Jo that she was coming and she needed to get in there to see him. The girl refused. Austin told her to call Jo’s nurse. The girl told her the nurse was busy with another patient. Austin told her to call the doctor then and said “My mom is on her way and I’ll be waiting for the nurse out here”. The girl then told her the nurse was busy. Austin said, “I don’t care, I’m waiting!!” The girl on the phone told Austin, “You better call Dr. Physical Therapist, because you can’t come in tonight”. About one minute later the nurse came to the waiting room visibly shaking. Austin told the nurse, “I am not a mean person, but there are a few things here that are making me mad. Dr. Physcial Therapist told us that we can now bring our family to see Jo. I have already called Jo to tell him we are coming, so he knows and is counting on us coming, so we can’t just not show up.” The nurse then sighed and said, “I have been in there for 3 hours, just with Jonah.” (This was a blatant untruth). Austin said, “Well that’s funny, I just spoke to Jo 15 minutes ago on his phone and there was still nobody in there. I am going into Jo’s room a few at a time to at least just say, ‘Hi.’” The nurse then told Austin, “Well, Okay a few at a time”.  As this conversation was going on with the nurse, the girl at the desk called security. Soon a security officer, a woman we had met in the ICU waiting room, weeks ago, while we both waited on loved ones critically ill, was the one who came through the door. She just smiled at Austin. Austin asked her if they had called security on her and the officer told her, “Yes, are you scared” (being kind and joking). She then told Austin to have a good night and walked away.

When Austin walked into Jo’s room, Jo’s face was scrubbed cherry red. He looked panicked. His iPod was behind his mattress where there wasn’t a prayer he could reach it. They moved his phone completely across the room on a table and had been turned to silent. Austin asked Jo why his phone was clear across the room and he started tapping his mattress by his head and he said, “It’s supposed to be right here.” Jo was so worried. Austin finally broke down and started sobbing and asked Jo if she could pray with him. She prayed that he would be surrounded by guardian angels and that he would be comforted and be able to rest. In the meantime, the nurse came into the room with a bunch of candy bars to give to the kids.

While all of this was going on, I was in session with a client. I could hear my phone buzzing and buzzing.  Tom was in bishop meetings all evening and wasn’t home yet. When I ended the call with my client there was a message from Dr. Physical Therapist telling me he understood, “that Jonah got sick this evening and that you’ve been trying to get ahold of his nurse. I would be happy to talk to you about things, please give me a call back.”  I called him right away and told him about the incidents with Jonah this evening. I asked why there has been no sitter. All I could think was that Jonah is incredibly vulnerable and incapacitated (it takes a great deal of effort and TIME to find the nurse button and then push it and that’s if the remote is by his hand where he can feel for it and he’s not otherwise occupied in puking!!!!!!!!!) and this is why there was to be a sitter 24/7.

The doctor told me he was placing Jo on IV for fluid and implementing the orders for the new drug. He said he was calling to get a sitter placed for Jo, however he was uncertain if he would be successful due to it being mid shift. I asked him to text me the outcome. Within a short period of time I received a text saying a sitter was coming. I text him back, “My other daughter just got back from the hospital to relieve my other daughter, who was afraid to leave Jo and they called security to have her removed! I am totally baffled at what is going on.” He text me back, “I am not sure. I will get the nurse manager involved tonight.”  I am so thankful he contacted me and I have not been left trying to get ahold of him.

Somewhere in the past 4 days Jo stopped having an aid or sitter assigned to his room. No one ever talked to me about this stopping. Up until the last few days a sitter was just outside the doorway at all times. I was told when we left the other hospital that Jo would have a sitter 24/7. I am terrified that Jo could have aspirated his own vomit, (he very well may have) and died or get pneumonia. Sorry doesn’t fix, dead!

Tom and Jon went back to the hospital to be with Jo. I am exhausted, and terrified, and stressed!!!

I LOVE MY BOY!!!! #JustWakeUpJonah

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