Sunday, May 29, 2016

May 25-29

May 25, 2016 The Captains Niece Prays on His Behalf!
Tuesday morning was just a tough morning for me. I felt like I had lead in my bum after Jonah’s bad day and night yesterday! Austin (Jonah’s oldest sister) and her three youngest kids stopped by after dropping the two older boys off at school. I asked if everyone would pray with me and two year old Izzy eagerly stated that she wanted to say it.  We all knelt down and Izzy folded her arms and bowed her head. Her prayer was so sweet and sincere and without prompts, “Dank you Heavnee Fauder. Dank you for dis day! Dank you for Unka Jonah! Please bless him, his hurties really bad…Amen!” I immediately felt at peace. “Except ye become as little children”. . .  No more needed to be said, Amen. 

I drive to the hospital each time holding my breath. It takes courage for me to walk off the elevator and into the rehab unit to ask for the report on Jo’s status. I have been battling guilt and anger over these past few days. Being at the hospital and anticipating going to the hospital is incredibly taxing. Leaving Jonah at the hospital, alone, is incredibly traumatic and yet I am so thankful for the reprieve from being a front seat spectator to his struggles. I have been experiencing a new feeling. I, at moments, have been feeling anger at Jonah for not having worn a helmet and for being so reckless. This dissipates as I then recognize that I am only angry at myself for not being as brave as, I think, a mother should be. Oh what a mental battle this has been, and continues to be for me!!

Jonah’s nausea and vomiting was better today as it came only with some specific kinds of movement. The physical therapists have noted that his vertigo is horrific if he moves his head forward, past vertical. This made me feel a little better. Dr. Moore is right about his equilibrium being the issue. I am more relieved thinking it isn’t another infection! He has had no fever and shows no additional signs of a greater issue. What an incredibly miserable thing to deal with.

Again, we were asked not to come to the hospital to visit Jo, as they were still doing assessments through the afternoon. They told me Jo would be done by about 2:00 PM and I could come see him after that. Jonah got his first shower in 39 days! They put him in basketball shorts and a t-shirt after. When I walked to the door of his room and saw him my heart sank. His CNA was sitting outside his room staring at him, not saying a word. Jonah was awake, sitting upright with his stupid helmet and neck collar on, staring out the side of his bed toward the window.  No sound in the room, no Ipod going. I asked why the CNA was not in Jo’s room with him and he just mumbled something. I asked him if it was because he didn’t want to dress down in the plastic aprons, gloves and mask and he said, “Yes”. While I completely understand, it really bummed me out! At the other hospital, the “sitters” were required to be in the room with Jo and they interacted with him when he acted “awake”.

Chandler came with me to see Jo. He looked happy that we were there. One of the first things we always ask is if he is in any pain. He motioned that his head was hurting. I asked the CNA why his helmet was still on if he was just laying there. He stated that he didn’t know, but he would ask why and if it could come off. She asked him if he was feeling bummed and he motioned a “little” with his hand. A few minutes went by as we waited and Chandler began to show him pictures of the last couple of rugby games, the semi-finals and championship game, to distract him. He smiled. She showed him the pictures of the “Just Wake Up Jonah” signs that were hung on the field. She showed him the Captain America socks that all of the DSU team wore during the game and the large number of spectators in the stands. The CNA came back and said we could take his helmet off. It was so sweaty inside of the helmet. That poor kid!!

The idea came to me to hand him a pen and paper and see if he could write his name. I found a pen in my purse and the only paper we could find was a paper towel. I placed the paper on the desk we pushed in front of him and gave him the pen to write. He placed the pen on the paper and asked him if he could write his name. He took the pen and with a little adjusting to hold the pen correctly, he wrote out his name. I was so excited I jumped up and down and we laughed and applauded him. I then decided to go ask the nurses for real paper and a clip board so we could hold the paper up at an angle he could see easier. I then asked him to write where he was hurting. He then wrote, “the top crown”. So we now knew it was the crown of his head. We asked how bad it was and he held up 4 fingers. We were then able to ask the nurse to give him some Tylenol. It was very difficult for him to see what he was doing due to the fact that he can’t hang his head down at all. So, Chan wrote the letters of the alphabet big enough he could point to the letters he wanted. He got tired quickly and pointed, “N, V, M”. As I was standing there saying, “What are you tying to say?” Chan said, “Never mind”! He was using “texting” language!!!!! That cracked me up. The nurses were shocked at his abilities and those papers are going in his scrapbook as his first writing after his TBI.

While Chan spoke to Jo, our nurse took me on a tour of the unit. She introduced me to the Speech Pathologist. The Speech Pathologist was filled with praise for Jo. She was truly stunned at what he was doing. She told me that she intended to get Jonah’s trach out as quickly as possible! This shocked me because I have been told, repeatedly by the medical staff that this would be one of the last things taken out. This is such a miracle. I can’t wait to see if he can speak!!!!

Jo’s nurse told us that Jonah had gotten his shorts on with very little help today! She said he pulled his foot up to his opposite knee and put the shorts over his foot and then did the same thing on the other side. He was able to lift his own rear off the bed to pull the shorts all of the way up. I am stunned at how quickly his progress has become.

Soon Jonah was giving us a signal, only I didn’t catch on right away. He was trying to tell us he needed to use the bathroom. Another miracle! We left the room as the nurse came in to help!!

Jon and Austin (Jonah’s brother-in-law and sister) went to visit him in the evening, after they attended the Temple. Austin said he was being happy and interactive with them. As they were about to leave she told Jo that Jon would be back to stay the night with him. Jonah smiled really big, held up a peace sign with his hand and then took his index and middle fingers and pointed to his eyes and then turned and pointed them at Jon to tell him, “I’m watching you” and probably, “You better come back!”

May 26, 2016  The Assessments are Done and Tallied for the Captain!

We were to be at the hospital by 2:00 PM for the team meeting. All of the kids except our 3 youngest, Tom and I, and my father all attended, as asked. The team we were meeting with consisted of the Physical Therapy doctor, Speech Pathologist, Occupational Therapist, Physical Therapist, Case Manager, Social Worker, and Nurse. Each team player was given a chance to report their findings or talk about their role in Jo’s recovery and their immediate goals for Jo. As we listened, the theme was the same throughout each report; Jo was astounding all of them! There were tears shed by these professionals as they spoke of the progress made in just 2.5 days and the progress made at all, considering the severity of Jonah’s TBI. Their goal is for each patient to gain 18 points on the physical/cognitive measure of skills each week. Jonah had already gained 11 points in just two and a half days of therapy. Also, usually they see higher numbers in the physical abilities than the cognitive abilities on this assessment, however Dr. Physical Therapist pointed out that Jonah scored more in the cognitive portion, which again, is so astounding. I couldn’t stop myself, I had to shout out, “Here is my born-again Mormon; Praise be to God!!” Dr. Physical Therapist reported that even as we are in our meeting, Jo’s trach was being removed, baring any problems. All of us responded with shock and cheers!!! I could feel the love and genuine care of these professionals for my son!!!

We left the meeting to go to Jo’s room, only to hear that they weren’t able to get his trach out because in younger patients they tend to heal so fast that scar tissue forms around the trach and it becomes a project to get it out. We were standing outside Jo’s door being told an ENT was going to have to come tomorrow to take out the trach. Dr. Physical Therapist overheard the conversation as he was headed into his office and quickly turned out and gowned to go in Jo’s room and get the trach out. We all left with a prayer that it would come out for this doctor. We weren’t able to see Jo, however none of us walked out of the hospital touching the ground!! We floated out filled with hope and joy, as we knew that all were seeing the evidence of God’s healing power in Jo!! Jonah isn’t just getting better, he is leaping through the healing process.

I just have to put a plug in here for OxyClean laundry spray. Everyday I am given a bag of laundry to do for Jo because I insisted he wear his hospital garments and he is now wearing “everyday clothes”. Everyday it is puke and/or poop I am to get out of these bright white garments and clothes. I spray them down and throw them in the wash. All garments continue to be bright white and without stains.  It is so so amazing to me.

As I walked through the front door of my home, I noticed there was already a message from the hospital. As I play the message a nurse stated, “Dr. Physical Therapist was able to remove the trach and Jonah is doing well”, such a sweet tender mercy!! I was so excited to see what Jo could do now.

May 27, 2016  The Captain is Astounding Everyone!!!

My brother-in-law, sister and niece have come from California for the Memorial Day weekend. My sister, niece, Zach and I all went to go visit Jo. As we walked off the elevator and into the rehab center this evening we were greeted by Dr. Physical Therapist’s big beautiful smile and, “Jonah has done great today! He is speaking!!” Oh my gosh, there are just no words!! We raced to his room to gown up and enter. Jo was awake and happy to see us. His nurse was in changing some dressing over his port. She told us that Jonah has been speaking with just a reminder to take a deep breath and push the words out. She showed us his catheter had been removed and Jonah had pretty well mastered the new plastic urinal mode of using the bathroom. She told us he had asked for his glasses and stated that he would like to wear them when he is up. She told us he has been helping her as she worked on various things on him.  

Jonah’s nurses and CNA’s are absolutely wonderful!!!  When I come in they are so excited to tell me all about the amazing things Jo has done in the day. They are so tender and get teary as they talk about Jonah’s astonishing accomplishments. They tell me he is so sweet and helpful and funny!!!

When Jo heard my voice outside his bedroom door I heard him say, “MOM!” Music to my ears!  His voice was breathy and very soft! I was so excited that he was so excited. He took my hand and pulled me down for a hug, as my head reached his he said, “I love you mom!” I just can’t believe we are here, at this place, where he can communicate and hug me and tell me he loves me!!! What a miracle!!!! What a MIRACLE!!! There were so many times the thought crossed my mind, “What if Jo didn’t remember his mom or family when he awoke?” That thought had been so sad to me. I am so thankful he knows us AND loves us!!!

He asked for Tom so I called him to see if he could break away to come see Jo. Tom was so excited that he was able to ask, he dropped everything and ran to the hospital. Jo heard Tom in the hall and began to call for him, “Dad, Dad”. When Tom was all gowned up we had him stand in the doorway and have Jonah call him. When Tom walked in, Jonah put his hand out for him. Tom took his hand and Jonah pulled him down to hug him. Tom hugged him and told Jo how much he loved him, and Jo was content to let Tom stay there forever. I asked Jo if all of us being in the room was making him feel anxious or overwhelmed and he said, “No, you calm me!” Sheesh, I can’t take it!!!!
He greeted everyone else in the room with a wave. I asked him if he had seen the minki soft blanket I had bought him because it was still sitting on the floor in a bag. When I brought it out and let him feel it, he pulled his sheet off and pulled the blanket towards him to put on.

Jonah kept rubbing his hand over the part of his head that the skull had been removed. He signaled for me to come over and grabbed my hand and guided it to the indentation in his head. He wanted me to feel it. I told him that the indentation is because his skull is gone and that his skull was being kept in a special place in Salt Lake City, but he wasn’t to worry about that. I told him that when the time comes they will send his skull back a few days before the surgery, so they could place it back in his head. His eyebrows furrowed at this information.

Jo was still using a lot of sign language rather than speaking and I asked him if it was hard for him to talk, was his throat sore? He told me, “No, it is hard to find the words”. That reminded me of a prayer that 4-year-old Deegan said some weeks ago in which he asked Heavenly Father to, “Help Jonah find his words”. I’m telling you, the tender mercies are amazing to me.

As the moment came for us to leave to go eat dinner Jo told me he wanted to come too. He spelled out, “J-O-N-A-H   G-O” in sign language. OH MY WORD, I just wanted to die that he couldn’t come with us. We told him that he couldn’t leave yet, he needed to stay and work hard and learn to walk and hold up his head. He got sad!! It broke my heart!!! He kept trying to move his legs off the bed, so he could go. We told him that Tom, Jon, and Charlie would be back to watch a movie with him and that Jon would come spend the night with him.  By the time the men got to Jo’s room, he was barely awake. They tried to watch a video of the final game for DSU rugby when his team took the championship. He stayed awake for just a moment and zonked for the night.

Driving home from the hospital my heart was feeling so perplexed as I could find no words adequate enough to express my gratitude to my Father in Heaven for Jonah’s life being spared and for the rapid progress he is making each day to healthfulness!!! As I prayed to express this to the Lord, I was given a great understanding. I won’t be able to express it, totally the way it was given to me, but the answer I received was that I would only be able to express this type of gratitude by the manner in which I lived my life. I have learned that working to be in a place where the Lord could be with me has got to be a daily thing and that the changes I had made to have the Lord with me, through this trauma, should be permanent.

May 28, 2016  The Captain Wanted His Dad

Jon said that when Jo awoke in the morning, he was telling his CNA to, “Wake up Dad”. He thought it was his dad lying in the bed. Jon said he felt bad when Jo realized it was him. Within a few moments, physical therapy was in to work with him, and his day began.

Again, as we entered the hospital this evening we were given a wonderful report about Jo. He had worked hard and had been chatty. His CNA said she turned on the rugby game again and the two of them watched it using the speaker in his room. She said she actually had to turn it down because they had gotten pretty loud in there. Jo told us, with excitement that his team had made it to finals!!!! We told him that not only had they made it to finals, they had won the entire D1AA Rugby Championship. We told him they had presented him the trophy when he was in the ICU. We found the footage of Coach Moffitt bringing in the trophy and telling Jonah, while he was still deep in his coma, that they had won the game for him and then the coach placed the trophy in Jo’s bed next to him and we took pictures. Jo didn’t seem to be able to wrap his mind around what we were telling him and showing him on that video. That’s okay, there’s lots of time to get caught up!!!

Since Jo wanted to get out of bed so bad we asked if we could take him outside. It was approved and we got Jo’s helmet on and placed him into his motorized chair and outside we went. We were all very impressed with the way Jo could move his chair through the various hallways with very little help!!! Tom had to help Jo, the whole way, keeping his head up and helmet in a position that would allow his glasses to sit correctly on his face and relieve some of the pain. Jo has a very hard time keeping his head upright. It makes things more difficult for him that the helmet really hurts his head. It is also extremely hot and uncomfortable and Jo’s face drips with sweat when he is wearing it. It is hard for Jo to wear his glasses with the helmet because it makes the temples hurt and it is constantly moving his glasses to a place he can’t see out of.  He began to ask us to take it off. I will call first thing Monday morning to see if our helmet guy can help make that helmet more comfortable.

As soon as we were outside and into the parking area Jo asked, “Where is dad’s truck?” That little smarty was trying to head to the truck to break out of that joint!!! We laughed and told him he couldn’t go home yet, but to work hard and he will be home soon. Again, it was time to leave to go feed the troops dinner. Jo stated he wanted to come. He asked Tom to stay. We told him that dad and Uncle Charlie would be back later to be with him.

 The stresses and trials of this situation are numerous!!! We have so many “wins” and then so many challenges.  We have seen how distracted Jo is with therapy when we are there and we’ve been seeing the results of how great therapy is when he is not distracted by a family member. The rules Dr. Physical Therapy would like is while he is in therapy, he is working hard. In between therapies he is to rest, and preferably sleep. He would like family time to be in the evenings.

In every phase of this trial I have learned there is nothing passive about faith. Faith takes action!!. The natural man in me is tired, overwhelmed, scared, and sometimes wanting to hide from all of this and my roles as mother, and wife, however I have learned that I must meet my Savior everyday. I have to reach out to him through scripture, music, and prayer. So many times I have begun to feel despair and very literally lifted my hand to the ceiling to reach for my Savior as I prayed that my shoulders would be strengthened to bare the burden placed there and that I could yoke myself to Him that my burdens would be made light. My courage has only come as I submitted myself to Him and then I have been strengthened.

May 29, 2016 Who in the Heck is Texting Me?

At 2:33 PM I got a text, “How much longer before you come here?” The sender said it was from MY email address. This perplexed me, however I have been getting strange friend requests since this blog was started and I thought maybe it was from one of them.  At 4:04 PM I got a text, “Agni 9mp J9”, from the same email address. At 6:58 PM I got another text, “Where are you? Come visit!” All of a sudden it hit me, “Jonah is texting me from his iPod!!!” I had not been to the hospital at all yet because our day was crazy with Zach and Holly blessing their baby and the dinner after. Tom and I had been watching our grandbabies for our kids as first one couple went to the hospital to see Jo, and then another. When Austin and Jon got back from the hospital Austin said, the nurse said, Jo had been asking her to call mom all day!!! I told Austin I had just figured out it was Jo that was texting me.

When Tom and I got to the hospital, Jo said he had tried to text Tom too. His texts didn’t come through because Tom doesn’t have an iPhone.

Our niece and her husband surprised us by being in town and going to visit Jo. She said that she and her husband were gowned and in Jo’s room and just talking to one another about Jo when her husband asked her where Jo had served his mission. Both of them just about died when they heard the words, “South Carolina” fly out of Jonah’s mouth. They hadn’t seen the video on Facebook yet and had no idea he was talking. We all laughed so hard!!!

Jo seemed restless to me tonight, he couldn’t keep his hands still. I asked if anything was hurting and he said his whole body just aches. I asked him the pain level and he held up one finger! I asked him what he was thinking about during the day the most. He said, “Going home!” He had told Austin that he had made some goals, so I asked him what those goals are. He said, “Getting my skull back on and going home”. I asked if the sick feeling was getting any better when he moved and he gave an emphatic, “NO!” I asked what he wanted to do and he said, “Just sit here and talk with each other”.  It still takes a great deal of effort for him to speak in a way we can understand him most times. When I asked what he wanted me to bring for him he said, “Good movies”.

His nurse was so cute about telling us how Jonah had brushed his teeth and swished out his mouth all by himself today. She also said that he helped with every part of the process of changing his clothes and sheets, as much as he was able. He is still struggling with eye/hand coordination and seeing, accurately, where to touch to get the right button on the iPod. His nystagmus is still there.  The therapist tells me there are some fantastic exercises that can be done to minimize this effect. Bring it!! Jo wants to come home!! I love my boy!  #JustWakeUpJonah

1 comment:

  1. Every day I am so encouraged about Jonah's progress and hearing of
    your family and the support and love you share with other. Thoughts and prayers from me come each day and I hope along with Jonah that he will be home soon.