Wednesday, June 29, 2016

Jonah has been the recipient of many MIRACLES!!!


June 19, 2016

As I fasted this day, I pondered what more I could say or pray for. As I pondered, a story from the book of Ether in the Book of Mormon came to my mind. It is the story of a man named, The “Brother of Jared” (this is the his only name in the Book of Mormon) . There are many things to learn through the story of the Brother of Jared, however the part that was rolling through my mind took place as he was in the process of finishing building some barges, which were of unusual workmanship, which were to carry his people across the “great waters” to a promised land (America). Ether 2:17 17, 20 describes these ships: 
17 And [the barges] were built after a manner that they were exceedingly tight, even that they would hold water like unto a dish; and the bottom thereof was tight like unto a dish; and the sides thereof were tight like unto a dish; and the ends thereof were peaked; and the top thereof was tight like unto a dish; and the length thereof was the length of a tree; and the door thereof, when it was shut, was tight like unto a dish.
20 And the Lord said unto the brother of Jared: Behold, thou shalt make a hole in the top, and also in the bottom; and when thou shalt suffer for air thou shalt unstop the hole and receive air. And if it be so that the water come in upon thee, behold, ye shall stop the hole, that ye may not perish in the flood.”
The Brother of Jared was worried that they would have to cross the sea in darkness and went to the Lord with this problem. Ether 3:1-2, 4-6
1 And it came to pass that the brother of Jared, (now the number of the vessels which had been prepared was eight) went forth unto the mount, which they called the mount Shelem, because of its exceeding height, and did molten out of a rock sixteen small stones; and they were white and clear, even as transparent glass; and he did carry them in his hands upon the top of the mount, and cried again unto the Lord, saying:
 2 O Lord, thou hast said that we must be encompassed about by the floods. Now behold, O Lord, and do not be angry with thy servant because of his weakness before thee; for we know that thou art holy and dwellest in the heavens, and that we are unworthy before thee; because of the fall our natures have become evil continually (I am always saying this); nevertheless, O Lord, thou hast given us a commandment that we must call upon thee, that from thee we may receive according to our desires.
4 And I know, O Lord, that thou hast all power, and can do whatsoever thou wilt for the benefit of man; therefore touch these stones, O Lord, with thy finger, and prepare them that they may shine forth in darkness; and they shall shine forth unto us in the vessels which we have prepared, that we may have light while we shall cross the sea.
 5 Behold, O Lord, thou canst do this. We know that thou art able to show forth great power, which looks small unto the understanding of men.
 6 And it came to pass that when the brother of Jared had said these words, behold, the Lord stretched forth his hand and touched the stones one by one with his finger.
The Lord asked The Brother of Jared to come up with a plan, and present the plan to Him with faith, knowing it could be done, and God would grant unto him his desire. In my mind I saw my plan for Jo and I needed to present it to the Lord with faith. I knew the Lord could heal Jo’s part of the brain that was causing the nausea and vomiting, and vertigo. Just as the Lord did for The Brother of Jared, I asked the Lord to reach down and touch Jo’s brain and heal it so he could begin to move forward quicker with his rehabilitation, unhampered by the severe sickness he had been experiencing. I KNOW it can be done. 
  As I was teaching today and talking about a story in the Book of Mormon of obedience and enduring to the end, while withstanding great tribulation, I was shown that “the walls of my prison were [about to be] rent”. I was told to hang on!! I am continually amazed at the revelation given through amazing sources. It occurred to me as I was pondering this experience, that every time we are asked to complete an assignment for the Lord, it is always an opportunity to be tutored, blessed and strengthened. When we choose not to take the assignment, we are giving up those blessings. It isn’t that the assignment doesn’t take effort and faith and may be incredibly difficult, but as we continue anyway, we are given so much more than the effort we spent.
I closed my fast at dinnertime with complete confidence that, in the Lord’s timing, Jonah would heal from his vertigo (and I prayed that it would be sooner than later, especially knowing we were having to extend Jo’s time in the unit, with our insurance company, because of this great set-back)I even felt that it would happen in the blink-of-an-eye when it happened, that one day he would wake up and it would be gone. As I said, “Amen” at the end of my prayer I was filled with peace and an assurance that had been given to me throughout the day that, “Great changes were going to take place this next week!”
I got to the hospital after dinner to find Jonah holding a barf bag to his face. He had had a small episode of vomiting in the morning and was still feeling nauseated. I was so dang discouraged. I cried all the way home! “Please Heavenly Father give me strength to endure this with Jo! Strengthen Jonah that he can continue to cope through this great sickness and discouragement!!” I hang on to the belief and stand on the words that God has Jonah in his hands. He is aware of all things. In these words, is the only place I can find peace enough to keep breathing!!!!

June 21, 2016

I had just gotten to the hospital to see Jonah and had stepped out into the hall to ask the doctor a question. When he finished answering it, he said he needed to talk to me about something else. He told me that his request for additional time in the neuro rehab had been turned down and that Jonah would have to be released from the rehab center by Thursday; his 30 days were up. I honestly felt like the air had just been knocked out of me. I asked where he was going to go and he said he would have to go to a “Health and Rehab” or as I used to call them, a “Convalescent Hospital”. I learned today that your insurance dictates what type of stay it will be within the that singular type of institution. . . Health and Rehab vs Convalescent. If it is saying you can have rehabilitation you are admitted as a “Health and Rehab” patient. If they don’t give you the rehab benefit, you are admitted as a “convalescent” patient and you are only there to get your basic needs met. Jo is going to be a rehab patient for the next 30 days and then, if it is approved, he will turn into a “convalescent” patient who gets no rehab. Dr. Physical Therapist explained that Jonah will now only get 90 minutes of rehab per day vs. 180 min., total combined (occupational therapy, speech therapy, physical therapy). He went on to say that because Jonah is on TPN (The nutrition fed to him through his PICC line, into his vein) there were not very many places, which could take him. My experiences with these types of institutions were not helping the chaos of emotions going on in my brain.  

I could hardly believe my ears as Dr. Physical Therapist was telling me he had tried everything he knew to do to get our insurance company to agree to let Jonah stay with a very structured therapy plan. SelectMed’s contract, simply, was that Jonah gets 30 days in a rehabilitation inpatient center. No matter Jonah’s condition; they are not under any obligation to extend. The doctor told me he was going to try again to call the insurance company tomorrow, however he said that, despite his successes with getting extended time in the past, this time they had “dug their heels in” and were not budging. I asked how long it would be before he was transferred and was told it would be tomorrow. The doctor just apologized as heartfelt as he could. I knew, he knew this was not in the best interest of Jonah’s health and healing, but his hands were tied.

I could hardly breathe without uncontrollable sobs and had to leave the hospital, without telling Jo, to regroup and get control of myself. I just felt I had been slugged in the gut and couldn’t catch my breath. What were we going to do????? Jonah has not progressed far enough to be without the intensive therapies and watch and care offered at this rehab center. He still needs 24/7 watch. He was just beginning to bond with his caretakers. He needs help eating. He needs labs everyday. He NEEDS THE THERAPY!!!!!!! This was just so incomprehensible!!!!! Despair was quickly sucking me in and I wanted to drive to the end of the earth and jump. I couldn’t bare the thought of him being in a convalescent hospital. I just kept saying, “This can’t be right, Lord!” And then even as those words were coming out of my mouth, I knew that He would provide, because He’s got this. Again, I was reminded that this was Jo’s walk with the Lord and He was not going to let Jo fail, no matter what! OH MY WORD THIS IS SO SO HARD!!!

I decided to drive over to the new facility and see what it was like. I was shocked at the beauty inside. It was peaceful and serene. We were greeted warmly and shown the whole facility. The woman explained how things would work with staffing and care and that Jo would have his own room for thirty days and then insurance would only pay to place him in a “semi-private” room. This is where he would share a room with another patient with only a curtain between them. The facility was amazing, really, however Jo just wasn’t at a place in his healing that allowed him to safely survive in this environment. What if he were to throw up and not be able to move to a safe position that he didn’t aspirate? Who knew when someone would find him? Or he tried to get out of bed and fell to the ground and broke something, HE HAS BRITTLE BONE!!!! I was told that he would not have anyone to watch him, however he could be put on what they call, “High alert” where he would be looked in on as a caretaker was passing by the room. This is it! This is what can be offered!! Isn’t there some sort of ethical component to this? I was told that there would be no one available to assist Jo in feeding himself in his room and thought, “Well he won’t be eating then.” I was told that if he was to receive assistance, he would have to be taken to the dining room and sit with three other clients, all would be fed by one aid. This isn’t going to work because Jonah can’t have the stimulation while he is trying to eat. IT WON’T WORK!!!!!!!! 

I started trying to figure out how to bring him home instead. Our home is so small, but maybe we could move the furniture out of the living room and turn that room into his room. The girls and I got onto Craigslist to find a hospital bed, electric chair and other medical equipment we might need. This process all ended, as I understood that Jonah would miss out on 30 days of therapy if I took him out of the facility. Our insurance will only cover 20 outpatient physical therapy appointments for the YEAR!!!!!!  We are soooo stuck.

What are we going to do?? 

Tom told Jo this afternoon that he is being moved. We got no reaction from him. I am worried he isn’t going to take it well.

We will be having a team meeting tomorrow afternoon with Dr. Physical Therapist and the neuro floor Social Worker to discuss what will happen with the move.


June 22, 2015

I drove to the hospital with great trepidation for the anticipated move. I just feel so helpless in getting what Jonah needs. I worry about the actual move because in the past Jonah has become so ill because of all of the movement it takes to get him from the bed, then onto the ambulance gurney, then onto the ambulance, then driving over bumps and around turns, then pulled out of the ambulance and into the facility and onto his new bed!! Eeeesh it is such a process. I had to pray, with so much faith, that the Lord would strengthen me to be able to be there for Jo and watch him go through all of this and that Jo would be strengthened and that the trip would not make him sick!!! I just feel so devastated by all of this! I prayed that Dr. Physical Therapist would be able to get an approval to stay.

When I got to the floor I was told that Jonah would not be going today. I was informed that the new facility was waiting on the formula for Jonah’s TPN nutrition and for approval from the insurance company for Jo to be admitted. WHAT??? I was told that they could take up to two weeks to make up their mind. I was so relieved that we had another day and possibly two weeks!! Maybe the two weeks would give us the time we needed to get Jonah more steady and ready for the difference in care. In our team meeting the doctor told us he had tried all he knew to do with the insurance company again today and they were not budging. He said he would try to call in the morning, however he was not hopeful. I have not been impressed with the social worker on the rehab floor.  I have not figured out in what capacity she acts in her role as social worker. She had not guided, mediated, educated, facilitated, or shown much empathy. In fact, I have hardly seen her interacting with anyone other than other staff. She had few answers for any of our questions.

When I got to Jo’s room his CNA told me that Jonah had refused to let his therapist take him out of his room today. He wouldn’t talk to ANYONE. I asked Jo if he was feeling sick and he signaled no! He is back to using hand signals and eye signals. He did eat two small single size cartons of ice cream and part of a cut up chicken strip dipped in ranch dressing, mostly by himself, as the CNA directed him. (Jonah was eating chicken strips because it is what he said he would eat, so the dietician took his tray back downstairs and made him chicken strips!! I have loved the neuro-rehab’s dietician. She has cared so much for Jonah. She has been interested in what he will eat and has, on several occasions, gone back to the kitchen to make Jo a different food to get him to eat. She checks up on him too. She is a little angel!!!) Jo didn’t want to get dressed today and is still in his hospital jammies. I immediately began to worry that there was something wrong with his shunt or something. I asked his nurse if there had been any changes to his meds, and he said that there hadn’t been any that he could see as we reviewed his med list and what had been given to him over the past few days. The nurse said he felt that Jonah is depressed. Oh my word, what do I do with this??!!! I had pushed that idea out of my head even as I had thought the same thing earlier. A CT scan of Jo’s head had been done earlier in the morning and showed that everything looked great. This was a huge relief for me. After ruling out everything I could think of I went to work talking to Jo. I told him he couldn’t give up. I told him how I, and so many other people have been praying and fasting for him and reminded him how far the Lord has brought him. I kissed him and hugged him and held his hand. There was little reaction from Jo.

June 23, 2016

I felt lighter today, feeling relief from the imminent move. Chandler asked me to go to her OB check with her today. Everything looked great with the baby. She was asked if she wanted to be induced on Saturday. How exciting is that??? Of course she said, “Yes”! We left the doctor with a hope that she would be called Friday night and told that they had room for her and to head to the hospital for induction.

It was after lunch when I got to the hospital for Jo. As I walked onto the floor I was told that the insurance had given approval for Jonah’s admittance to the new facility and that they would be there to get him in a few hours. My heart sank!! I walked into Jo’s room to find him staring out the window from his bed. I talked to him and got little response. I asked him if he was feeling sick and he signaled me with his thumb turned down, which means he feels okay. I began to finish taking the posters and signs we had placed on his walls down and pack all of his things to take to my car. I was so overcome with so much despair and fear of what was up ahead that I prayed out loud as I drove. I went home to kneel and pray for comfort and to know what to do. I didn’t want to experience this day. I didn’t want to go back to the hospital ever again. I listened again to Elder Holland’s talk, which I have listened to several times in the past several days. I was hanging on to the words, “No matter how serious the trial, how deep the distress, how great the affliction, [God] will never desert us. He never has, and He never will. He cannot do it. It is not His character [to do so]. … He will [always] stand by us. We may pass through the fiery furnace; we may pass through deep waters; but we shall not be consumed nor overwhelmed. . . . Keep loving. Keep trying. Keep trusting. Keep believing. Keep growing. Heaven is cheering you on today, tomorrow, and forever.”

Austin and I left to go to his new facility and decorate his room. We were there just a short time when we were told that Jonah had been picked up and was in route to the hospital. I felt I was holding my breath as the ambulance drivers wheeled Jo into his room. I fully expected them to tell me how sick Jonah had gotten, instead they announced that Jonah had done very well on the trip over and he was still doing well. OH MY WORD . . . to say I was shocked is a total understatement. They moved him to his bed and again I waited for him to say he wanted his emesis bag. He looked bright and alert. I asked him how he was feeling and he said, “Good”.  GOOD!!! I could not believe it!!! As I was watching the staff come in and start their assessments it finally hit me, since the close of our fast on Sunday he had not vomited or complained of vertigo!!!!! He hadn’t had a severe headache!!! He had eaten several items and had not thrown them up!!! He still didn’t have his Jonah appetite, however he would try to eat!!! The Lord had literally healed that issue in the blink of an eye!!!! No matter which way they were moving him he was not getting sick. When they were done with their assessment of his skin, where they have to turn him all over the place to make sure he has no bed ulcers, he said he felt, “GOOD!!!!”  I cannot express the gratitude I am feeling for the healing of my son. I was also reminded that I had felt that, “Big changes were happening this week”, as I closed my fast Sunday, and I had assumed that those big changes had only to do with the move. Jonah’s healing was a huge change; one that we desperately needed for Jonah to continue to progress!!! Thank you Heavenly Father for accepting our family’s fasting and pleas for Jonah’s healing. It had been 30 straight days of nausea.. All of it has been taken and healed. I bare testimony that this was God’s hand, there are absolutely no other explanations.

Austin and I left to go buy a DVD player for Jo’s room. We brought it back, installed it and showed Jonah how to use the remote. Jo looked good! He felt good! But he still was not talking to anyone except every great while we got a one-word answer.  Son, what can I do to help you?  Jo was so tired by the end of that day!

June 24, 2015

Today was the big appointment for applying for Social Security. I had all of the papers I could think of to bring with me. I was nervous because government employees I have worked with in the past have not always been kind and I needed someone kind today!!! My number was called to go back to window 7. Mrs. Hernandez introduced herself to me and the process began. An hour and a half later we were done and I was given her direct line and fax number to turn in a few more items of documentation. She was incredibly kind and very efficient!

As soon as I got out of the meeting with the Social Security, I got a call from Chandler telling me they haven’t been giving Jo food!!! A nurse had said he didn’t need to get food because he had the TPN. What the heck??? I was so ticked!!! I told Chandler I would pick up some chicken strips and be there in a minute. When I got to the hospital to see Jo, he was sitting in his bed. Jo was laid back in bed sucking on a Popsicle. He was having a difficult time swallowing the juice and I asked Chandler if they had given it to him in that position. She said they had.  I started to cut up the chicken strips and called for the nurse. Jo was still not talking and seemed very down. I explained to her why he had the TPN and that he needs to eat in order to get off the TPN. ROARRRRR!!! She told me she didn’t know that!!  I am so frustrated; I can only imagine how Jonah is feeling!!! How am I supposed to feel that Jonah is in a safe place if those taking care of him don’t know what’s going on??

 I raised Jo up a bit more and took the Popsicle away from him. About this time another man walked in and introduced himself as a therapist. Chans daughter, Emery was talking and moving all around the room. I would place a piece of chicken in Jo’s mouth and I would have to coach him through the chewing and swallowing process. The man finally said something like this, “I don’t want this to hurt your feelings, however he cannot have all of this stimulation while he is trying to eat. He has to have it quiet and have just one person in the room. He is having a hard time focusing on what he needs to do to eat.” RIGHT???? Now, in one hour we have gone from not knowing he eats to seeing how he cannot be in a dining room with other people while he is eating. The therapist then said, he would need to arrange to have Jonah eat in his room with someone in there feeding him. He told me that he observed that Jo must sit at a certain upright angle to eat. (I’m glad he hadn’t choked to death on his Popsicle!) The man then left the room and came back with a cup full of tongue depressors, mouth swabs and a flashlight and then instructed me to use the sticks to open his mouth and check to see if he had swallowed or pocketed his food before he was laid down or given a drink.  I told him I didn’t feel qualified to feed Jo and was even frightened to do it until I had watched more carefully and been coached in the proper method. I felt that anyone feeding him needed to see it done and be coached through it before he was left in any family member’s inexperienced care to feed!!  He was telling me that he was doubtful that there would be enough staff through the weekend to attend to Jo’s feeding. He said he wanted a commitment out of me that there would be someone here to feed Jo at the lunch or dinner hours!!! I, at first told him, “Okay” and then got really mad. We are not experienced with this, NO FREAKING WAY!!!!   Why in the heck is he here? About this point in the conversation, I wanted to punch him in the face. I then recanted my agreement to have someone here. I told him that I have so much going on that I don’t want Jo sitting here waiting for me or any other family member to get fed. He said that there was only a skeleton crew through the weekend and again he wasn’t certain he would be able to find help.   WHAT ARE YOU TALKING ABOUT???? He left the room and came back to say this person would do it at this time and that person would do it at the other time.  There are just no words!! I just want to be shot!!!

The next therapist came in to talk about Jonah’s work effort in therapy. She said he worked really hard and didn’t want to stop even when she felt he would need to rest. I asked if he had felt sick and she reported he had done very well and had no episodes of sickness. Oh that feels so good to know he is over that sickness!!

 Tom and the girls and I came back to watch a Redbox movie with him. He got through about an hour and fell to sleep.  Please Jonah come back to us, start talking again!!! What are you doing in that head of yours?

June 25, 2016

My day started with Chan being admitted to the hospital to induce labor. I told her I would divide my time today between her and Jonah.

Austin and I decided we were going to go do a make-over on Jo today. We would go wash his hair and Austin would cut it and trim his beard. We would put yummy smelling products on him and make him feel special. When we got to the hospital we found Jonah left in a wheelchair in his room. He was all alone and had slid all of the way down the back of the chair so his bum was off the seat, his legs were bent behind him under the wheelchair seat, his head and shoulders near the base of the back support, where the seat and back of the seat meet. His hands were under the arm wrests trying to hold on. My first thought as we rushed over to him was, “How long has he been like this?!!!”  There was no nurse call light button even close to him. Austin and I pulled him back to a sitting position and I called the nurse.  While we waited for a nurse to respond I asked how he was doing and he said, “Good.” The nurse came in and I discussed with her the way we had found Jo. She really didn’t have anything to say about it. She began to discuss what she had experienced with Jo and asked if it was normal that he, “chew his pills” when she gave them to him. I just looked at her like she had rocks for brains, “No, it isn’t normal for him to chew his pills!!” For crying-out-loud, I feel like I am in a twilight zone. “Do you chew your pills that are meant to swallow?” was all I could think.  As she stood by Jo talking about him I realized that they had no idea how alert and together he is because he was not talking to them. The nurse explained to me that when she had tried to feed Jo breakfast, he spit everything she put in his mouth back out! I explained that he must not have liked what she was putting in his mouth. I told her that he not only speaks, but he is bilingual. She was astonished. I got a little peeved. Do they not go over these things when they transfer patients? Is there no communication or notes passed on to find out about a patient? No one had asked him if he needed to use the bathroom, because no one knew that he could and has been, so they just left him in a Depend, changing him when it was convenient to. I was blown away!! This poor kid is probably was thinking, “I’m in hell!” I told the nurse everything I could think to tell her, right down to what he will eat. She explained that she didn’t think that they (the hospital) was equipped, staff wise and with training, to handle the level of care Jonah needed. WOW, what in the heck am I going to do? She left the room to go discuss all of this with her nurse manager. A while later the nurse came back and gave me the nurse manager’s card and cell phone number and told me to call her anytime with concerns or questions. I had already told this nurse my concerns!!! She said that on Monday the nurse manager would get with the therapist who is the insurance liaison for the hospital and would work to get the insurance company to readmit Jo to the neuro rehab.

Austin and I went to work on Jo. Not too long into the process it was made apparent that Jonah’s head had not been washed in weeks. He had incredible “cradle-cap”; chunks of debris were being lifted from his scalp with each comb through. No wonder he was always playing with his head. His hair is so thick and with the exception of his scars, I had not looked intensely at his head. My heart broke for him as I could see the level of care he had received was sub-par and he had not been able to express his discomfort. As I thought about it, I realized that whenever they had Jonah up, it was required that he have his helmet on. He also had a difficult time with showers. 99% of the time he became quite ill during his showers. I can only imagine that the occupational therapists didn’t want to prolong any shower and cleaned his body and any obvious issues, usually that being throw-up and then get him back to bed. Still, I can’t believe that they didn’t care for his head. It is really incomprehensible to me.

Within two hours we had him cleaned with his hair cut and beard trimmed. He looked beautiful!!!  When we were done Jo indicated he needed to use the bathroom. I called for the nurse. I was then told that a therapist had to be the one to move him to the bathroom and she was with someone. I again said, “He needs to use the BATHROOM!!!” Soon a girl who stated she was with therapy came with four others. They were all outside Jonah’s door talking and laughing as they gowned up. There seemed to be absolutely no urgency. I honestly was baffled at their behavior. So I rolled Jo’s chair into the bathroom with his IV stand. It was still another couple of minutes before four of them entered the bathroom with Jo. I decided to straighten Jo’s bed while they were in there so that he could go directly to bed to rest when he was done, it had been a long morning and afternoon. As I pulled back the draw-sheet there was an 18-inch circle of dried urine with feces marks on his sheet. Someone had just covered the spot with the draw-sheet instead of changing the sheet. I pulled the bedding off and put new bedding on. My feelings for this place were so overwhelmingly angry and I had little confidence in their ability to care for Jo. My heart is just so heavy!!!

Once Jo was resting comfortably in his bed, I left to go to check on Chandler. They started the PIT at 8:00 AM and at 5:50 PM she was only at a 5. They had broke her bag of waters earlier in the morning and she had been laboring without medication to that point. She had decided that it was time to have an epidural now and they had just finished placing it when I walked through her door. I told her now that her epidural was “on board”, she would probably go quickly. Chan didn’t believe me. I rubbed some oils on her and then told her I was going to run to the store to get some SPAM and Mr. Yoshidas Sauce to make Jo some of his favorite SPAM and rice, it was 6:00 PM. Chan said she’d call me if there was a change. I drove approximately 8 blocks to the store, ran to into the store, grabbed four items, ran through the check stand and then out to the car and my phone rang; Chandler was at an 8, it was now 6:15 PM. I drove 4 blocks back to my house and dropped the groceries off and drove 3 more blocks to the hospital, it was 6:30 PM when I walked back into her room. The nurse was telling her to call her back into the room if she felt the urge to push and then she left the room to call Chan’s midwife. Chan had another contraction and said, “I feel like I need to push!” The nurse came back in and gloved to check her. “You’re a 10!” she said, and then said “let’s have you push with the next contraction to see if the baby will descend quickly or not. Chan pushed and the baby nearly crowned. Within just a few more minutes her mid-wife ran through her bedroom door. Her mid-wife just happened to be a few blocks from the hospital when she got the call. At 6:42 PM, Eliza Jo made her appearance into the world! She was 6 lbs. 6 oz., 18 inches long. It was such a peaceful birth. Babies are such a wonderful gift of joy and love!!! Once Chan and the baby were snuggled together and resting, I ran back to my house to get Emery so she could come meet her new sister. On the way to the hospital Emery said in a mad voice, “My baby is BAD!!!” I was a little startled and asked why she was bad. Emery answered, “Because she doesn’t like me!” I told her, “Oh Emery, of course she likes you! She loves you and she can’t wait for you to talk and sing to her, and show her all of your toys!” Emery was darling with the baby and it was easy to get her to come back home with me when her visit was over.

We went back to the hospital to see Jo and show him pictures of the baby and sit with him for a bit. It’s been a long day!! I’m pooped!!!

June 26, 2016

I made Jo his SPAM and rice and went to the hospital to help him eat. Sundays are quiet at the convalescent hospital. They have a church service there for all of the residents, which started at 9. Jonah was not able to attend; maybe they thought he wouldn’t like the stimulation. I’ve decided I’m going to try to attend with Jo next week to see how he reacts.

By the time I was done feeding Jo, it was time to leave for Savannah’s fiance’s mission homecoming address. What a wonderful talk he gave; they are a good match. We ran home to make dinner and then went to the hospital to be with Jo again. When we walked in, we were greeted with a smile! That was a blessed gift!! I told Jo that I wanted him to listen to the songs that have meant so much to me and lifted me and strengthened me. Music is such a powerful tool!! The first song, I explained, is one that I feel is “his song”. I asked him to put his hands into fists and raise them in the air, to punch through the air with the beat. We synced his phone to his big speaker in the room and shut his bedroom door so we could “turn it up!!!” Soon the moving, booming beat came blasting out of the speakers. Jonah smiled as he recognized the song and sang the words, moving his fists to the beat:

"Fight Song" by Rachel Platten
Like a small boat
On the ocean
Sending big waves
Into motion
Like how a single word
Can make a heart open
I might only have one match
But I can make an explosion

And all those things I didn't say
Wrecking balls inside my brain
I will scream them loud tonight
Can you hear my voice this time?

This is my fight song
Take back my life song
Prove I'm alright song
My power's turned on
Starting right now I'll be strong
I'll play my fight song
And I don't really care if nobody else believes
'Cause I've still got a lot of fight left in me

Losing friends and I'm chasing sleep
Everybody's worried about me
In too deep
Say I'm in too deep (in too deep)
And it's been two years
I miss my home
But there's a fire burning in my bones
Still believe
Yeah, I still believe

And all those things I didn't say
Wrecking balls inside my brain
I will scream them loud tonight
Can you hear my voice this time?

This is my fight song
Take back my life song
Prove I'm alright song
My power's turned on
Starting right now I'll be strong
I'll play my fight song
And I don't really care if nobody else believes
'Cause I've still got a lot of fight left in me

A lot of fight left in me

Like a small boat
On the ocean
Sending big waves
Into motion
Like how a single word
Can make a heart open
I might only have one match
But I can make an explosion

This is my fight song (Hey!)
Take back my life song (Hey!)
Prove I'm alright song (Hey!)
My power's turned on
Starting right now I'll be strong (I'll be strong)
I'll play my fight song
And I don't really care if nobody else believes
'Cause I've still got a lot of fight left in me

No I've still got a lot of fight left in me

The next song we blasted was my song to him. I told him, “I play this song all of the time. It’s my song to you!” This time we both were teary as we listened to Rachel belt out the words:

“Stand By You” by Rachel Platten

Hands, put your empty hands in mine
And scars, show me all the scars you hide
And hey, if your wings are broken
Please take mine so yours can open, too
'Cause I'm gonna stand by you

Oh, tears make kaleidoscopes in your eyes
And hurt, I know you're hurting, but so am I
And, love, if your wings are broken
Borrow mine 'til yours can open, too
'Cause I'm gonna stand by you

Even if we're breaking down, we can find a way to break through
Even if we can't find heaven, I'll walk through Hell with you
Love, you're not alone, 'cause I'm gonna stand by you
Even if we can't find heaven, I'm gonna stand by you
Even if we can't find heaven, I'll walk through Hell with you
Love, you're not alone, 'cause I'm gonna stand by you

Yeah, you're all I never knew I needed
And the heart—sometimes it's unclear why it's beating
And, love, if your wings are broken
We can brave through those emotions, too
'Cause I'm gonna stand by you

Oh, truth—I guess truth is what you believe in
And faith—I think faith is having a reason
And I know now, love, if your wings are broken
Borrow mine 'til yours can open, too
'Cause I'm gonna stand by you

Even if we're breaking down, we can find a way to break through
Even if we can't find heaven, I'll walk through Hell with you
Love, you're not alone, 'cause I'm gonna stand by you
Even if we can't find heaven, I'm gonna stand by you
Even if we can't find heaven, I'll walk through Hell with you
Love, you're not alone, 'cause I'm gonna stand by you

I'll be your eyes 'til yours can shine
And I'll be your arms, I'll be your steady satellite
And when you can't rise, well, I'll crawl with you on hands and knees
'Cause I... I'm gonna stand by you

Even if we're breaking down, we can find a way to break through (come on)
Even if we can't find heaven, I'll walk through Hell with you
Love, you're not alone, 'cause I'm gonna stand by you
Even if we can't find heaven, I'm gonna stand by you
Even if we can't find heaven, I'll walk through Hell with you
Love, you're not alone, 'cause I'm gonna stand by you
Love, you're not alone
Oh, I'm gonna stand by you
(even if we can't find heaven, heaven, heaven)
Yeah, I'm gonna stand by you

Jonah was back!!! We played several more songs and we all sang and felt the spirit of the Lord with us. Tomorrow is another day to conquer, and we will TOGETHER!!!
Our good news of the night was that the hospital had decided to re-culture Jo to see if any of the scary bacteria was still present, which was responsible for the gowning, gloving and masking. The nurse informed us that the preliminary test showed nothing significant and we would know in two more days if he was still a carrier for the mutant bacteria.


June 27, 2016

I went to the hospital to talk to the director or whomever else I needed in order to get Jonah moved or find out if there was something that could be worked out. Within just a few moments I was seated with the director of the facility and the director of nurses. I shared with them the events of the past three days. They listened with empathy and concern. The director explained that normally there would have been a meeting set up before an admittance and the patient would be discussed at length with goals and needs addressed. We talked about the newness of having younger patients and how the staff is unfamiliar with working with them. The nurse addressed the “chewing of the pills” issue and stated that this was a common occurrence in the patient demographic they normally serve. They both assured me that with added training and making some adjustments in staffing they could tend to Jonah’s special needs. A meeting was set up for tomorrow where Jonah would be discussed and Jonah would be attending, so he could participate in his care plan. Our meeting ended with my hugging them both and thanking them for hearing my concerns and addressing them with a plan of attack. I loved the idea of having Jo attend the meeting!

After, I ran to Jo’s room to hug him and check on him. When I walked into the room, Jo greeted me with a big smile and immediately said, “There’s cards for you and Savannah” and pointed to his table; there was one envelope addressed to me and one addressed to Savannah. I asked him, “Who brought these Jo?”  He just grinned as I opened mine and read the front of the birthday card. On the inside, the card was signed, “I love you mom, Jonah!” Jo wrote it and he was soooo excited to give it to me!!! Gosh dang, I love my boy!!!! I tucked Savannah’s in my purse to take to her and we visited for a few more minutes. He said he was tired. I asked him if he wanted to take a nap and he said he did. I hated to leave him, but I was being forced to run all over to get the papers I needed filled out and signed by Jo’s old employer and the rest of the documentation I needed to turn into the Social Security office for Jonah’s application for disability.  They had only given me days to get it done and turned in.

There have been so many tender mercies and miracles in my day today. One of the things the SS office needed were Jonah’s pay stubs from his last employer. I had to think of where I would have put them back when I had gone through his room to straighten and clean it after his accident. I couldn’t remember if I had seen one. As I was contemplating if I had seen one, a basket in Jo’s room, which has a million papers in it now, came to my mind to check. It discouraged me because that basket is where I had been placing all of Jonah’s mail and hospital/insurance EOB etc. It would take forever to find a small check stub. The minute I lifted the first stack I had grabbed, there was the check stub I needed!

I needed his last employer to fill out a “proof of employment termination” paper and had intended to drive clear out to where the youth residential home was in Toquerville. Because I had found the check stub I was able to see that the office for the residential treatment home was actually just a few blocks from my home in St. George, it would have been a wasted trip as I would have been sent right back to St. George. As I got to the business office buildings for this company, I had to try to decide which building to go to in order to find the right person to fill the information out. I didn’t even know who the right person would be, but hoped I would be guided to where I needed to go by the first person I found. As I pulled into one of the parking lots between buildings, there was only one spot left to park in. Right in front of the space was a door, which said, “Accounting Office”. I decided to start there. The woman at the desk took the paper from me, walked around a small wall and handed the paper to THE man it needed to go to. In less than 10 minutes I had the paper filled out and signed, and another copy of another of Jonah’s check stubs, which I never thought would be possible to get.

I ran from there to a copy store that could fax all of the papers into the Social Security office for me. As I waited, a man from one of our old church congregations recognized me and asked, “How is your boy? We sure have been praying hard for him!” That just warmed my heart!

As I left there and drove down the boulevard my car started to pull to the right. By the time I got to the end of the boulevard my front end was bouncing weird. Traffic was moving so slowly because it was heavy. My check tire light had come on the week before, however I had looked at my tires and saw nothing visibly wrong with them and even talked to my dad about it and he had said that one of my sensors could be out; the same thing had happened to him. I thought that maybe I needed to get air and was trying to decide if I should pull into a gas station or a tire store. I had almost decided to just pull into the closest gas station, but then felt pushed to keep going to the tire store. As I walked into the office of the tire store I told the woman I needed to get my tire checked. She told me it was too late, that they had put the last car on the rack at 5, however I could ask one of the guys to check the pressure in my tire and put some air in it. As I walked out of the office I grabbed the first guy I saw and started to ask if he would check my tire pressure and he looked over at my car and said, “Ohh, it’s flat! There ain’t no pressure in that! You’re going to have to drive far to get home, just go with it.” I thought, “What are you talking about?” He then turned into the car bays and said, “This lady has a flat tire and has to drive a long way, to Cedar City, and we need to check her tire.” Okay, I felt a little bad about that, but was so thankful for the help. They pulled my car into the bay and jacked it up. When the man reached in to grab the tire to pull it off, he burned his hand on the wires exposed from the inside tread being torn away from the tire, and was missing. You couldn’t have seen the gaping tear in my tire from the outside. Had I been going very fast at all I could have crashed my car or been stranded in the horrible heat on the side of the road until I could get help. They ordered me two new tires, placed my spare tire on and made an appointment for me tomorrow to have my new tires put on. I was in and out of there in 20 minutes!!

God is so good!! My footsteps were ordered. He went before me and made the “crooked places straight.” He is aware of all of my comings and goings and He provides every needful thing!!! I am so thankful for music and having access to so many uplifting and strengthening resources at the touch of a button, no matter where I am, to remind me where to focus my thoughts and faith. I am so thankful that even though this experience has been so dang hard, there is so much hope for great things to come for Jonah. There will be an end to these ridiculously hard times and Jonah will be healed and move forward with his life. This is a huge, amazing and miraculous blessing that not every mom gets to have in these life threatening situations. I am so humbled by the answers to prayers, and guidance and miracles that have been given to my Jo and me!! I love my boy!!! #JustWakeUpJonah

8 comments:

  1. Lots and lots of strength to Jo and Heather and whole family. Warm hugs!

    ReplyDelete
  2. This comment has been removed by the author.

    ReplyDelete
  3. This comment has been removed by the author.

    ReplyDelete
  4. Oh Heather thanks to your incredible gift of writing and sharing and articulating I learn so much about the gospel and the world we live in and how to navigate it better and about trials that other people experience as well and that we all have struggles and we're all in the twighlight zone together by golly. What a tremendous read I just wish it wasn't at the expense of what you are all going through. What heroes though my goodness!! Jonah is definitely Captain America what an inspiration and what a gift his story is to the rest of us out here just witnessing and hoping and praying for all of you. Love, Catherine PS Happy Belated Birthday you are the cutest 39 yr old on the planet :)

    ReplyDelete
  5. My name is Vern Willis and I have been following the progress of Jonah since the accident. 26 years ago when my son was 16 my family had a similar incident. I know how you hurt inside and I just wanted to tell you to stay strong because things will get better with time.

    ReplyDelete
  6. Have you checked with your insurance to see what kind of home health care benefits you have? They may pay from the bed and any equipment you need because it's usually cheaper for them. They have home health care nurses and CNAs. I know your concerned about the decrease in therapy visits but they can give you plans for you to do at home. So you won't see the actual therapist as often but he will be getting quality care by people who love him.
    The home health care people can make sure he's got the proper bed so that he doesnt get bed sores. The fact that his hait hadn't been washed in all this time is very disturbing. Letting hm lay in his own waste is neglectful and dangerous.

    Also once his disability kicks in he may be eligible for Medicaid. Medicaid may have more benefits for disabled pepole who need therapy.

    Also I think it will make both of you feel better. No one can take care of you than your Momma. You won't have to be running yourself ragged going back and forth and you know he's ok and not afraid.
    Also you'll decrease his chance of getting an infection.

    ReplyDelete
  7. Heather, Just a thought, your HR person or your Insurance Agent should be able to assist you in navigating all of these appeals. I do that for my clients with no problem. Maybe reach out to them, or heck, reach out to me and I can see how I can help you! -Charlene Alldredge

    ReplyDelete
  8. Has Social Security mentioned Medicare Disability at all? Medicare would be able to provide some sort of Home Health Care for you also as a part of Medicare Benefits.

    ReplyDelete