Sunday, May 15, 2016

May 14 -15

May 14, 2016

The physical therapist doctor had warned me that they would be trying to move Jonah “somewhere”, we just weren’t sure where, due to several factors. It was true that he had progressed far enough in his recovery that he no longer needed the intensive critical care of the ICU, however we know that he is still in a coma and completely helpless and cannot speak for himself or really communicate in a way, except through elevated vitals, that he is in distress. We also know that he will be entering the Level IV of the Cognitive Function Scale, also called the Rancho Los Amigos Scale. In this level the patient is easily agitated, showing signs of confusion and radical vitals. They can exhibit “bizarre nonpurposeful, incoherent or inappropriate behaviors”. (I have been praying consistently that Jonah will not have to go through this to the extent that has been describe to me. I even bind that in the name of the Lord Jesus Christ).  In this stage it will again take a delicate balancing act of medications and limiting stimuli: sound, sight, touch, taste and smells. I was told that he was to have plain walls and no visitors, except mom or dad for 15 minutes per day. His brain will not be able to process all stimuli coming into the brain. It will not know what to filter out in order to pay attention to a single item or thought. An example of this would be standing in the middle of the food court at the fair. There are all kinds of smells and colorful booths. There are swarms of people all talking and moving about. There is a performer standing on the stage singing. There is clapping and every now and then you are bumped into by someone random. Those of us with healthy brains can choose what part of that scene to focus on and even we can even become overwhelmed and agitated. Jonah will become so so overwhelmed at “too much” of anything. Silence, darkness, and little touch will be important to him. The ICU is a difficult place to find any of that, so they decided that he would be better off tucked safely at the far corner, and in an alcove of one of the units of the hospital. The date and time of the move was still in the air.

I got a call late last night, about 11 PM, from Jonah’s ICU nurse, Russell, that they would be moving him to the new unit in just a few minutes. Tom was gone on a Father and Son’s camping trip, so Austin and I went to the hospital to pack up his belongings and move them to his new room. The thought of leaving the security of the ICU and all of the people I had gotten used to and trusted with his care was incredibly unsettling and even frightening. I couldn’t help but get quite anxious and even cried all the way to the hospital. I HATE CHANGE, especially in high stress situations!!! (Dang I have got to get stronger in this area so that my life can “simmer-down-now”). Russell assured us that the nurses were wonderful on that floor and that an order had been written that Jonah would have a “sitter” 24/7 in his room with him. Russell also told us that should Jonah begin to struggle severely, at any point, he would be brought back to the ICU with no problem. We were introduced to the new unit, and all of Jonah’s wall décor and rugby balls and trophy were put in place before we rolled Jonah to his new room. We moved him into his new bed and transferred all of his information to his new caretakers. I loved that Russell asked me if there was anything I needed the new staff to know. It was 1:30 AM before all was done and we felt comfortable enough to leave. As I walked out of the unit I stopped to hug Russell. He squeezed me tight and said, “I love you guys”. Man, there are just some beautiful people in the world! It was such a tender mercy! Austin and I cried all the way home.

I slept in until 7:30 this morning, it felt so good considering I had been up, yet one more night, until 1:30 AM. I decided that since Jonah had a sitter I would go grocery shopping. I have not been for 5 weeks!!!! I just couldn’t make myself do it!! I made a list in order to get in and get out quick. I HATE going to COSTCO because everything in there is BIG!!! I hate and get overwhelmed with “too much” of anything having to do with food and people. (The stress of all of this has brought back some of my old anorexic behaviors; its all about control-baby!! I diagnose myself constantly!!! I’m not doing a very good job of being a clinical social worker to myself!! I have thought so many times, “Why do we have to eat? YUCK!!”)  I was so blessed because there was hardly anyone at Costco!!! What??? We got a front row parking spot. Heather Saige and I cruised through the isles. I could think and I had my list to keep me focused and driven. We got to the checkout and we didn’t have to wait at all!! No one was in front of me and no one behind me; my perfect stress free scenario!!! On our way out, we buzzed through the “check the receipt” line  we passed and we got our smiley face on our receipt and were off. When I got home, Heather Saige ran in the house to get helpers. Holland was the only one home. When Holland came out and saw the car full of groceries she became gitty! She exclaimed, “You went grocery shopping??!!! As we placed the food on the counters in the kitchen, Holland ran her hand over the loaves of bread and berries with soft reverence and said – with tears – “I am so excited! I don’t have to make sandwiches out of hot dog buns anymore”. Okay, that was so sad to me! What was even more amazing to me though was that no one had complained, they were just making do. EEESSSH I felt a little guilty about that! I will do better.

I got to the hospital by 1 PM. This is the latest I have ever gotten to the hospital. I walked in the room to find the “sitter” sitting on the couch in his room looking at something on a phone. I dressed in my cape, gloves and mask and entered the room. Jo was sleeping. Jo wears special boots to keep his feet at a 45-degree angle to his leg. I’m pretty sure I have described these “super power” boots in a previous post. I asked how long the boots had been on him. She stated that they had placed them on earlier in the morning. I told her that the boots were to be on for only 2 hours at a time and give him a rest for two hours.  She stated she hadn’t known that. I know we told the staff the night before as we had transferred this information. I pulled his boots off and then his slipper socks. I pulled the circulation pumps off his legs and grabbed a warm cloth to wipe his legs down. I became so frustrated as I noticed that as I rubbed, I was getting fecal matter off of his legs. Whoever had changed him after he had gone potty had not cleaned him off properly. I got a clean cloth and went over his upper leg and groin again, and again came back with a yellowed cloth. My heart was beating really fast now and I was just getting really ticked off!!!! I just felt like being really mean, so I kept my mouth closed while I concentrated on just breathing. I repeated this again and one more time before I came back with a clean towel. I showed this to the CNA. I noticed too that his garments had dried fecal matter smeared on the lower portion and on his hospital gown there was more dried fecal matter, dried formula and dried mucus from his coughing it out of his trach. The special tape that is attached to his upper thigh was also covered in feces, and needed to be changed. I also found a new sore on his upper thigh that concerned me. I asked her if she knew that it was there and she didn’t.  I told the CNA I wanted it looked at and watched. I showed the CNA that he was dirty. She had stated that she had a clean gown right beside her and she had intended to clean him. I asked her if she knew that he had clean garments in his cabinet and she didn’t. I decided that I would go ahead and give him a bath because I wanted to be sure he was clean. I rubbed the oils on his feet and massaged his calves and feet and went to tuck his pillows under his legs so his heels were hanging free to avoid bedsores. The pillows that supported his legs also had dried fecal matter on them. The fears I had had about him going to a new unit were confirmed to me when I found Jonah in the dirty state with his boots being left on for hours. I know it is going to take some time for everyone to get to know how things are done, however I don’t like that Jonah has to suffer during the learning curve time period. It hurts me and is almost unbearable!!

After he was all changed our CNA asked if I would like to have him shaved. I know Jo likes having his beard, however he has been sweating so much he looked uncomfortable and so I had her shave him. Jo was now awake, his left eye was open wide and his right eye was a little squint. I held his hand and talked to him. We listened to the song, “Somewhere Over The Rainbow” sung by “IZ”. This is one of his favorites. I then played, “I Know that My Redeemer Lives”. I asked him if he would like to have prayer with me and he squeezed my hand.  I know he knows. I just do. His heart rate and resparations calmed. It was very peaceful.

Almost as soon as we were done, physical therapy came in and got busy. They couldn’t get him to respond to anything so they asked me to talk to him. We got a little response from him, but not like we have in the past. I probably pooped him out giving him a bath. It was decided that we would try to use a cardiac chair tomorrow. It helps them sit without wearing out the therapist. It is probably more comfortable for Jo too. As they were finishing up, I left for home to cook dinner and spend some time with the girls.

The tender mercy came as his nurse entered the room. Tala told me that although she didn’t know Jonah, she knew OF him. She told me that she was the cousin of one of the DSU rugby players, Robert. (WE LOVE Robert!) She told me that she walked into Jo’s room and saw the poster we had hung right above his bed that said, “Just Wake Up Jonah” and was so touched to see it there because she had made that poster for the championship rugby game. She said she felt so honored to be able to care for Jo and told us that she felt he was kind of a celebrity there at the hospital. She also acknowledged that she had followed the story of when Savannah had been kidnapped and knew of the things that our family has gone through. As she shared her emotions with me my heart was comforted. She then explained that she would be caring for Jo for the next 3 days and was happy to do so. Thank you Heavenly Father for giving us Tala at this very unsettling time!!! He knows us and provides for our needs!!!

Tom and I went back to the hospital to tuck Jo in for the night and have prayer with him. I felt bad for the night nurse because Tom let her have it for the way Jonah had been cared for earlier in the day. She tried to tell him that she had several patients. Tom wouldn’t let her speak. He simply stated that she was giving excuses and we would not tolerate the incompetency. We would not tolerate Jonah suffering, especially having someone in his room 24/7. It was their job to care for him properly and we would not accept anything less. She simply stated that she understood and asked if there was anything she could get us. I just wanted to hug her. What a sweetheart. It is so hard to deal with the loved ones of these trauma patients, I know! Thank you for being so tender and kind.

I know I am walking on a very tight and thin emotional rope right now. I feel like my emotions change in the blink of an eye and every emotion is the “EXTREME” of that emotion. In the past two days I have felt like a psycho!! Jonah’s nurse in the ICU had had to change Jo’s clothes a few times already that day and went to grab more clean garments, however there were no more. (They make special hospital garments that look just like a hospital gown.) I told him to just give a minute and I would run home and grab some cleans ones. Thank heaven we live just 8 blocks from the hospital. I got home and I found the dirty garments still sitting in the dirty clothes hamper. The girls hadn’t finished their chore! I hurried and squirted them down with OxyClean and threw them in a load. My daughter Chandler told me she would bring them to the hospital when they were done. My frustration was building.  I thought, “I’ll just run down and buy a few more pair, we need them anyway for days like this”. I ran into Deseret Book and to the garment counter. I waited for a clerk to become free to help me. Time was tick-tick-ticking away and I wanted Jonah to have his garments on!!! A woman finally turned to me and asked me if she could help me. I quickly told her that I needed two more pair of hospital garments quickly as my son’s nurse was changing him. She asked me for my son’s name and she would go check to see if there was a letter giving permission for him to have them on file. She went and came back and said there was no letter. I told her that the letter had been written. My husband is his bishop. She told me that she could not give me the garments because there was no letter in her file. She went on to explain how it was all to be done and I shocked myself by flipping my arms in the air and stating between clinched teeth and tears, “I DON’T HAVE TIME FOR THIS!!!”  as she was in mid-sentence! As I ran out of the room I stated back at her, “It is easier to buy COCAINE!!!!!!!!”  Oh my word, “I am a mess” is all I could think as I cried all the way back to the hospital without garments.

Yesterday I was at a restaurant standing in the line to order my food. There were two customers ahead of me: a dad with two young sons, and a single woman. At this restaurant the customers walk along a long counter, behind glass, and tell the worker what item they want and what they want on that item. The worker was a young adult. She was speaking to each customer in a high-pitched voice showing absolutely no expression and barely taking a breath between questions, making everyone feel hurried and stressed, “What would you like?” “Black, Pinto or Refried Beans?” “I can’t hear him because of the glass?” (referring to the young son who was talking more to his dad than to the girl. So the dad repeats his request to her) “Hot, medium or mild sauce?” “Cheese?” “Next?” “Hi, what can I get for you?”, she asked to the next lady. The poor customer was getting flustered as she wasn’t sure what was what in the metal tins of beans, meats, and sauces. The customer then put her hand over the glass to point to the sauce she thought she wanted as the worker asked each question, “Hot, medium, or mild?” “Don’t put your hand over the glass.” The customer brought her hand back quickly, as though she had just been spanked. “Cheese?” The customer was trying to accommodate the worker and do her best with giving her the “right” answer. I noticed my heart rate was working its way up there again and I could feel the tears brim my eyes. I was getting so mad!!! I was feeling like I needed to jump the counter and punch and punch and PUNCH this girl in the throat. I was thinking, “Why does it have to be so stressful ordering food too?!!” By the time I was at the payment portion of the line there was a tall young man standing at the cash register only using two fingers of a bandaged hand to punch the buttons. As I looked up at his face I noticed a large bandage across his chin. He was so calm and friendly and trying to smile at each customer. I asked him what happened. He stated that he had been riding to work earlier that day and crashed on his bike. He had had to go get stiches in his chin and then hurried to work. Now I was crying because I wanted to give him a healing hug and thank him for being such a rockstar. “Way to fall down and get right back up!!! I need to be like you!!” 

May 15, 2016

As I was just getting out of the first meeting at church today my phone rang. The number was from Jo’s new hospital unit. His nurse was asking for Tom and I to be there in about 30 minutes as they were going to be putting him in a new type of chair for physical therapy and they thought Jo would be more responsive. Tom went to put all of his Bishop responsibilities on hold and met me at home. When we arrived at the hospital the physical therapy team was already in the hall gowning up. Jonah looked good. He looked at peace and was very clean! It was quite the project to get Jonah pulled onto this nifty table that then folded into a chair once the client was strapped in. The minute Jo was upright his eyes popped open. The physical therapist had Tom and I step forward and start talking to him. Jonah told us by squeezes that he saw Tom and me. All I could think to say to him as I looked into his beautiful green eyes was, “I love you, Jo. I LOVE YOU!!!!” Jonah then squeezed my hand and tried to bring his hand up to touch my face. I helped him touch my face and hair and then he tried to move his other hand closer so both of them could touch me. He was trying to say, “I love you!” I couldn’t talk without crying. I told him he was beautiful and that he was going to be perfectly healed. I told him to stay strong and hang on. I explained that the reason he can’t speak is because of his trach. I told him that Chan and Mike were naming their new baby girl “Elle Jo”, after him. I told him that it was Sunday May 15th. He tried to follow my hand to the right and then to the left. It was extremely difficult for him. I then asked him if he wanted another blessing and he squeezed my hand for “Yes”. I asked him if he was tired and if he wanted to lie down again to just stick out his tongue. Within a few moments out popped his tongue. Physical Therapy was pleased and called that session a great success!! We lowered the chair back to a bed and pulled him back onto his mattress. It was time for him to rest and one more bolus feeding.

It is such a great joy to be a mother and experience the love of a mother. What a privilege it is to be called as Jonah’s mother. I’m so thankful that in the Lord’s mercy and wisdom I did not know what I would be called to go through with my children for I surely would have said, “No, I can’t”. However I have learned, “I can do all things through Christ Jesus, who strengthens me!” The Lord is with me even in my imperfection, always there telling me to, “Walk into the light of His grace”!! I love my boy!! #JustWakeUpJonah


  1. Stay strong. Eat and stay healthy. This is what Jonah would want and needs. I have never met any of your family other than Elder Tuttle while serving in South Carolina. All of you are in my prayers. I believe in Christ and I believe in miracles. God bless all of you.

  2. I am so happy to hear that our beautiful niece Tala is able to help in the healing process of your son. That girl is a blessing to everyone she comes in contact with.. She has such a strong spirit, she's helped me through so much. She definitely took the right type of job for her personality and we love Everything about her! Thank you for keeping us updated.. I ask the boys often for updates, and they do their best to keep me in the loop but I do enjoy hearing things from your perspective as a mom, it's always a humbling and emotional time for me to read your blog thank you for your continued strength!!!

  3. You are such a talented writer. It goes without saying the audience is most capitaved by anything pertaining to Jonah's triumphs and set backs but gosh, I can relate to (as everyone else I'm sure) to everything else along the way and experience tears, hope, frustration, excitement, hope and even some laughter with you along the way. You should write a book one day with everything you've championed through and help even more people than you already do. Sending prayers every night, Love, catherine

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  5. Our pray goes to you and your family, I can not commence to comprehend the time your family my be going truth; I don't know what will I do if any thing will ever happen to one of my kids I do pray earnestly that in such a time my me saying for so many years that I have faith in Jesus Christ can really come trough and he has not to ask do you believe?, and see thing with a grateful hearts and not a complaining one Like you always have a scripture I think this one need pondering from all of us Moroni &: 42-47 42 Wherefore, if a man have faith he must needs have hope; for without faith there cannot be any hope.

    43 And again, behold I say unto you that he cannot have faith and hope, save he shall be meek, and lowly of heart.

    44 If so, his faith and hope is vain, for none is acceptable before God, save the meek and lowly in heart; and if a man be meek and lowly in heart, and confesses by the power of the Holy Ghost that Jesus is the Christ, he must needs have charity; for if he have not charity he is nothing; wherefore he must needs have charity.

    45 And charity suffereth long, and is kind, and envieth not, and is not puffed up, seeketh not her own, is not easily provoked, thinketh no evil, and rejoiceth not in iniquity but rejoiceth in the truth, beareth all things, believeth all things, hopeth all things, endureth all things.

    46 Wherefore, my beloved brethren, if ye have not charity, ye are nothing, for charity never faileth. Wherefore, cleave unto charity, which is the greatest of all, for all things must fail—

    47 But charity is the pure love of Christ, and it endureth forever; and whoso is found possessed of it at the last day, it shall be well with him. I can to your pay hoping to connect with you but it so sad that in such a sad time you spend so much time complaining I know for I have here that instead of a light for those that are not from or faith you have certainly put a stumbling block she always so mad like any buddy fault her kid is sick . Your girl know she doesn't have grocery but like you said she doesn't complain . My censire love to you and your family. may Christ and long suffering be with you

  6. I LOVE your honesty! I can so relate to your reactions of anxiety and frustration. I would have been furious finding my son dirty like that. You are amazing and a strength to so many. May your anxiety ease and peace be in your heart. Praying for Jonah...always. Liz