Tuesday, May 24, 2016

May 20 - 24

May 20, 2016 The Captain’s wounds have reopened!!

Jonah’s road rash looked so good for the last week or so. I thought we were well on the road to being completely healed from them and then we began doing his minimal physical therapy sessions where his limbs were being moved and pressure was placed on the wounds on his knees and the wounds began to break open. He began forming big blisters. As it is explained to me, because there was little movement while the wounds were healing initially, there is more of a chance of the wounds reacting by blistering and breaking open now that he has moved. The skin wasn’t being stretched during the initial healing. I think he may have more scarring than I initially thought.

Jo has been unable to sleep for the past 4 days and nights. He will take short “cat naps”, but is generally restless. He lays for hours with his eyes wide open. I feel like this is the number one sign to me that he has reached the Level 4 of the cognitive scale. Level 4 is supposed to be the worst level because he is supposed to be “out-of-control”, pulling at everything and thrashing!

Jonah is still not all of the way awake from his coma. We have begun to better see when he is “with us” and when he is not. Despite this fact, he has been tossing his rugby ball from the bed to Jon and Tom and doing a pretty good job at catching the ball when it is tossed back. We asked him how many siblings there are in his family and he answered by holding up 9 fingers. We asked him where he was in that line up and he held up his open hand and jiggled his thumb, showing us he is number 5. We then asked him, “But where are you in mom’s line-up?”, and he held up his one index finger. That’s right, he’s still my #1 baby boy! We all laughed at that and he grinned too. His smile is a genuine smile now and when we ask him to show his teeth, he gives a big cheesy grin, with his smile reaching higher on his cheek on the right side than the left. He has been trying to mouth words and he has learned to growl through his trach when the speaker is in place. This morning Jon was asking out loud how to finish spelling “Jonah” using ASL. He had forgotten what an “H” is and Jonah put up his hand with his his index and middle finger to show Jon what an “H” is. It is absolutely amazing to me. He is able to tell us how much pain he is in using his fingers as a 1 - 10 scale and has begun to move his hands with more precise movements to show us where something is bothering him. He has a tube with a humidifier connected to it, over his trach.and is constantly pulling it away. I think the mist from the mask tickles his neck and face. He moves his legs more too.

He continues to have issues with random nausea. Physical Therapy has been getting him up using a tilt board. They slide Jo over onto the board, strap him up using a huge Velcro strap at his chest and hips and calves. The board is then slowly raised to a near vertical position and Jonah goes through movements with his arms, practices keeping his head up, and practices keeping his feet flat to the base. He seems to tolerate this pretty well. Speech Therapy is the absolute worse for me to watch. They have to deflate the balloon in his trach, which makes him gag and gag and gag. They say that it is because when the balloon is deflated he can now smell and taste and because of the thrush on the back of his throat, it tastes horrible. (He has thrush because of the mighty and massive antibiotics they had to give Jo in the ICU for his bladder and lung infections.) After gaging that much he hardly feels up to trying to talk through his stupid trach. I feel like he just shuts down after this. He just stops responding. He has had episodes of vomiting after this exercise. It absolutely BREAKS MY HEART that he is so sick and hasn’t had the ability to tell anyone what is happening to him. It has got to be frightening to him, as his eyes open wide and he tries to move his head. Jo has lost 57 pounds since being hospitalized!!

May 21, 2016 The Captain Had to Miss the Show!
A professional dance company, called Kalamity put on a benefit show for Jonah tonight. Tia Stokes, the owner, teacher and choreographer, was a professional dancer for celebrities and now uses her amazing and stunning talents to do benefits for families experiencing calamities. She has been doing this for the past 9 years. It was an absolutely wonderful performance and included singing, hip-hop dance, and a slide show of pictures of Jonah’s life. They also had a bake sale, pizza sale, with pizzas provided by Hungry Howies Pizza, and sold Team Jonah T-shirts and Just Wake Up Jonah bracelets. Every bit of the proceeds goes to the family. St. George News, an Internet news publication, and The Spectrum, an Internet and newspaper publication covered the story.

May 22, 2016 Miracles Happen Most on the Sabbath for the Captain!
Sunday was a wonderful day with Jo! This is becoming a pattern, Sundays seem to be the day that he does new things and have become the most peaceful day of the week. As Physical Therapy had him sitting on the edge of the bed Jo was able to hold his head up, beautifully, all by himself and while doing that, he gave us the hang loose sign with both hands. As he looked up into my eyes it was the first time I felt he was really looking at me and then he smiled a real, genuine, big smile. He looked the healthiest I’ve seen him since his accident. I felt as though it were a vision of what he will become again!!! We were told that Jo was scheduled to be transferred to the Neurological Acute Rehab Center tomorrow!! I’m excited and I’m not! We were told that we would only be able to visit Jo in the evenings. We were told that he will be yelled at like in military or football coaching! (I can’t stand that kind of behavior.) We were also told that once he is there, he would accelerate out of his coma and in abilities. We were told that he would need easy-to-put-on clothing, because he would be required to dress in regular clothes once he is there (I can’t even imagine him doing this part of it, right now, but Tom and I went out and got him tennis shoes, peds, sweatpants and shorts.) We were told that there will be a special family meeting held at the center to explain what is going to be happening. We have been told that we will meet this person and that person and that there are some super fantastic individuals there that make up for all of the difficult stuff. This information has come from various service providers in Jo’s unit and a few past patients. I figure I had better listen to these people because they would know, and I am trying to prepare myself.

My job in church for the past two years has been the teacher of adult Sunday school, my class is called the Gospel Doctrine class. I had a sweet man offer to take the class for me for the previous 4 weeks, however he has another taxing job at church and he was unable to teach for me today due to a conflict in duties. All week I would wax and wane about jumping back into teaching. At one point, through this trauma, I felt I wanted to be released. This calling is very stressful at times. I felt like because I was still in the middle of my absolutely horrific battle and felt burned out, I wanted to hide from the world. As I thought about it though I felt that I was being prompted to start teaching again. I felt that I would be lifted up spiritually by being forced to study the material and scriptures for the lessons. Saturday was a crazy day. I was trying to get caught up on my life by doing chores, running errands, visiting with Jo, and going to the benefit concert. It was 11:00 PM before I was able to sit down and study my lesson and I felt a little panicky that I would be up into the early hours studying, I wanted to just give up. I was feeling so so tired. A talk that was given a year ago in our Stake Conference by a man, who had just lost his son suddenly, came to my mind. His son was a young father himself and this man’s business partner. The son had been in a meeting with him earlier and had walked out of the meeting, into the reception area and dropped dead. There was no warning. He said that in the throws of this great loss he was given a great calling (job) at church. He said he had been struggling everyday with indescribable grief and yet every single day there was someone that was placed before him that he had a choice to serve or not and he felt compelled to fulfill his calling, even while he wanted to close himself off from the world. He talked about wanting the world to give him a pause button, and yet there was no such thing. He was being required to live and complete his given tasks. He then testified of the strength and growth he would otherwise not have received had he refused his Heavenly Father. It was this story that solidified in my mind that I needed to “get back on the horse and ride”. I was so wrapped up in reading the material that I was able to stay awake and focused. I loved this part of the Book of Mormon! I was given inspiration and peace and confidence in the direction I’d take the lesson and I was able to sleep like a baby as a result. In Mosiah 24:10-16
10 And it came to pass that so great were their afflictions that they began to cry mightily to God.
11 And Amulon commanded them that they should stop their cries; and he put guards over them to watch them, that whosoever should be found calling upon God should be put to death. (My life isn’t this bad, but the doctors stop me in my tracks to remind me of “what is real” when I speak of divine intervention.)
12 And Alma and his people did not raise their voices to the Lord their God, but did pour out their hearts to him; and he did know the thoughts of their hearts.
13 And it came to pass that the voice of the Lord came to them in their afflictions, saying: Lift up your heads and be of good comfort, for I know of the covenant which ye have made unto me; and I will covenant with my people and deliver them out of bondage.
14 And I will also ease the burdens which are put upon your shoulders, that even you cannot feel them upon your backs, even while you are in bondage; and this will I do that ye may stand as witnesses for me hereafter, and that ye may know of a surety that I, the Lord God, do visit my people in their afflictions. ( I have said so many times that I do not walk on my own two feet. I could not possible experience these things and live without my Savior)
15 And now it came to pass that the burdens which were laid upon Alma and his brethren were made light; yea, the Lord did strengthen them that they could bear up their burdens with ease, and they did submit cheerfully and with patience to all the will of the Lord.
16 And it came to pass that so great was their faith and their patience that the voice of the Lord came unto them again, saying: Be of good comfort, for on the morrow I will deliver you out of bondage. (I know we will be delivered!!! Jonah will be whole!! It is all in the Lord’s time!)
May 23, 2016 The Captain Flew the Coop!
I missed a call first thing this morning as I was in the shower. As I looked to see who it was, I saw that the message left on my phone was from Jo’s hospital unit, my stomach stung. I then told myself that today, was the day! He was going to be moving and it was probably his nurse telling me the time of his move and it was safe to answer, I didn’t need to brace myself for the news. After saying, “Hello”, I was greeted by Jo’s nurse who then proceeded to tell me that Jo had pulled his abdominal feeding tube out of his stomach. She went on to say they were unsure how long it had been out. She stated that the surgeon had been called to replace the tube. My breath absolutely left my body.

When I walked into his room the CNA explained to me what she had found. Jonah was laying in a puddle of formula, it had dried across his gown and there was a few spots of blood!! In my mind, if it was dried on his gown, it had to have been the evening feeding. There are just no words. I was told that the surgeon had already been in and replaced the feeding tube. They were holding off on feeding him the formula until an x-ray with contrast could be done to be sure that everything is in its correct place. It was 3:30 PM before the “Okay” was given to feed and administer meds through the tube. I asked the nurse to wait to push his meds in to give enough time for food to be in his stomach so they weren’t administered on an empty stomach. Physical Therapy came for their second time in the day to do therapy and to say goodbye.

By 5:30 Jo was on his way to his new home at the Acute Rehab Center. He was no sooner in place in his new bed and I was in the process of asking his nurse to raise his head some because it is hard on him to lay flat and he began throwing up! While we were cleaning him up we pulled his gown down and noted the stomach feeding tube was again out, with the whole wide open to the air. I was just sick about all of this. The Physical Therapy doctor was brought in and was about to poke the same tubing that was in his stomach, back in. I asked him if he was going to use the same one and he said that he didn’t want the whole to close and the more time that passes, the chances are greater that it would. He pushed the tubing back in and inflated the balloon with a syringe of water to hold it in place. Again, we had to have a contrast x-ray done to be sure the tubing is placed in its correct place. It was decided that he would be given an IV of sugar water and anti-nausea meds as he had just lost every bit of fluid and food he had been given in the past 24 hours. They were going to wait until the next day to introduce formula again. I was so upset at the day’s events I could hardly stand to be in the room watching Jonah suffer. His vomiting had become so much more frequent as the week had progressed and now we were dealing with a feeding tube that kept popping out????? I put Jonah’s clothes in the drawers in his room as we waited for his meds to take effect. Even as I was leaving the hospital to go feed the girls, Jonah showed me with his hand that he only felt minimally better and kept rubbing his hand over the sore part of his stomach. Tom was going to come back and sleep with Jo.

As I got home, I just fell to pieces. I just felt exhausted, emotional and hopeless in being heard. I wanted them to check to see if there is another issue. It made no sense to me that it was only movement that was causing this issue, as I had thought at first. His nystagmus (bouncing eyes) was more severe in the earlier weeks than it is now and there was no nausea then. I felt paralyzed by discouragement. All I could do was sob, I wanted to go to bed and not get up to this nightmare, EVER! The girls and I knelt together, holding hands and prayed for Jo, for peace, and for understanding.

As we finished our prayer, friends pulled up in their truck and began hauling boxes of food items from Costco for our family. I couldn’t believe it!! It was fun food and easy to fix. They sat and talked and cried with me. It was very healing.

As Tom got to Jo’s room for the night, Jo threw up again and then again some time later. I KNOW there is something more to this issue than just that he is being moved around, as the new nurses and doctor, believe the cause to be. Jo has been in several sessions of physical therapy and moving from side to side in the weeks previous and not thrown up at all and now all of a sudden it is becoming much more frequent. It just makes little sense.

Crawling into bed I checked my phone and was comforted by a text sent to me by the manager of the floor where Jo had been:
“Heather, I just wanted to wish you, your family and Jonah the best as you transition into the next phase. I was able to see Jonah as he left our unit today. As they wheeled him by, I stopped and put my hand on his shoulder and whispered in his ear “Jonah, si se puede!”, which means, “Yes, you can!” in Spanish. He gave me a little smile and rolled out safely. I have enjoyed getting to know your family over this past week and will miss seeing all of you! I look forward to reading the updates and seeing the progress Jonah will make. Keep your head up. You and your family are amazing and will be a force for good to Jonah and everyone else. If you ever need anything, please don’t hesitate to reach out to me. Good luck to you and your Captain! Sincerely.”

Dr. Brene’ Brown teaches, “What is the best way to ease someone's pain and suffering? We can only create a genuine empathic connection if we are brave enough to really get in touch with our own fragilities. Sympathy drives disconnection by saying, ‘EWE, that’s hard!”. Empathy drives connection. We must look inside of ourselves to find something that we’ve felt that relates to the suffering within another.” This manager and a few others have been outstanding at being brave enough to experience empathy and connect to us and it has been very healing, and those moments were moments where we were given rest and even peace and a feeling that we could continue, rejuvenated.

May 24, 2016 The Captain is in Boot Camp – Both physically and spiritually!!
As I got up this morning I was given a vision in my mind of my laying Jonah at the feet of the Savior. I knew there was nothing I could do except what I was already doing. I was told that the Lord “had this” and that Jonah was in “boot camp” with the Lord and that it was between the Lord and Jo and that the Lord was walking with Jo through this experience. The Lord needed this time with Jo, without me. So, when Tom called me later in the morning to say that we were not to be in the hospital today because they were doing all of their assessments with Jo, I quickly found my mind filled with many things I needed to get done and hadn’t done because I have been living at the hospital with Jo for the past 37 days. I felt so relieved for the break and was given peace throughout my day.

I received a call from the rehab center Social Worker to meet with her at 2:00 PM. Chandler went with me to the meeting. I was also given the opportunity to meet the physical therapist that would be working with Jo. He told me that he was so impressed in his assessment of Jonah, as he was able to do many more things than he thought he would be able to do and he knew he was going to love working with Jo. He asked me what Jonah was like and I enjoyed the opportunity to tell him what a kind hearted, light hearted, and beautiful soul he is. I told him he was a hard worker and will work hard for him. He also told me that towards the end of their session, Jo pointed to the wall with the blue barf bags and then proceeded to vomit in the bag. I asked the physical therapist to find Jo’s nurse as I wanted to discuss this nausea issue with her. We waited for about 20 minutes and gave up and went on to get more errands completed. I called the hospital a while later and got his nurse. I explained my concern. She said she had discussed the nausea with the doctor and said they believed that its cause was an equilibrium issue. I explained that that made very little since to me, as Jo has been moved about quite a bit and not thrown up for weeks. I told her I wanted an infection in his belly ruled out. She simply said she would share my concern with the doctor. The doctor is leaving to go out of town tomorrow.

There are so many things that are so difficult to deal with and this expression of the mom being inept and unknowing, which I have had to deal with through this ordeal is getting exhausting. How hard is it to order a test? I am the one that has been with Jo the very most through this experience. I have sat by him for 36 days. There is not one other person that has seen what I have seen in this time because there is always a change of nurses and doctors. I have observed and listened to all of the precautions, and all of the side effects and warning signs and this story and that story from nurses, doctors, and those that have been here already. There is a LOT going through my mind, PLEASE, PLEASE, PLEASE listen to me and hear me out. Give me the same respect that I give you. We are a team. I am a mom and I have a wealth of information about my son that you don’t even begin to know or understand. I KNOW him!! Give me the courtesy of listening without the “rolling-eyes” attitude and freaking test him. In the end, if you are right, think of the happy dance you will be able to do as you pat yourself on the back, roll your eyes and say, “I tried to tell her”!!! AND I will have peace that he is not infected with something that could be treated.


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  2. So happy to hear that he is doing so well so far! He is in the best of hands at the rehab! All of the doctors, nurses and therapists will love him and dedicate all of their focus and efforts towards him. We owe so much to them and our Britt wouldn't be where he is today without their dedication and love towards him. Jonah will be cares for and grow so much during your time there. Keep holding onto to hope and faith. And keep staying positive, he needs that! You guys got this. Our thoughts and prayers are with you always!