June 11, 2016
Jonah’s last two days were rough with being sick. Last night we decided to have an impromptu family baby shower for my daughter Chandler. She is ready to deliver any time and we have done nothing to help her get ready. I am a firm believer that every baby gets a celebration shower whether it is your first or tenth baby!! Austin and I were with Jo until it was time to meet the other sisters at Target to get some gifts and then go to Applebees for the dinner and shower. As we were walking out of his room, Jo began to throw up, again. His head was just pounding!! He looked so worn out. We gloved up and went back in to help him get through this episode. I left with such a heavy heart!! His pallor was pasty and he had dark circles around his eyes. This is the first time for this, he has had lots of color in his face through this whole ordeal, which has been shocking to me at times, so to have him so pale tonight really disturbed me.
Dr. Physical Therapist went over this week’s “report card” of Jonah’s Functional Progress earlier today. Jo has improved from an overall beginning of 17 to an overall 52, in his three weeks of working at the rehab center. We discussed, at length, Jo’s PEG tube and the pain he has been experiencing and Dr. Physical Therapist told me he feels confident that all is well with the tube itself and its placement, and he felt strongly in favor of keeping it in for now. We came up with a new plan on how to use the feeding tube to better meet Jo’s nutritional needs and keep his stomach from expanding too much; to the point he throws it all up. The plan for now is to keep his feeds going continuously, at a slow and steady rate, for 24 hours a day, except during therapies. Doing this will get him caught up again on the caloric intake he should be getting and keep him adequately hydrated. In addition, the doctor wants him to have any foods he wants and asks for, within the guidelines of pureed food, but he will not be ASKED to eat additional foods. Jo continues to have absolutely no appetite! He is getting so skinny!! The doctor wants to give his stomach a break, at least through the first part of the week.
The doctor drew a picture for me, to help me visualize how the tube sits in his stomach and how his body created a tube of scar tissue between his outer layer of skin and his stomach, sealing off any potential leaks of stomach fluids from getting into the various layers of tissue and fat. The body is so miraculous! We also discussed the nausea. Dr. Physical Therapist said he felt pleased with the little bit of success we have had on some of the days with no vomiting. He said that he has pondered and researched ways of decreasing the nausea, even calling down to the oncology department for some suggestions. He said that he is, as of today, doubling the dosage of the Merinol and Zofran, and he stated he has more tricks up his sleeves to try if that is not helping Jo vomit less. He discontinued the Scopolamine patch to see what happens without it. He also discontinued the blood pressure medications Jo has been on since the beginning of this ordeal when he was experiencing so much neurological storming. This was really exciting to me!!! Maybe without these he will be less dizzy. (I had to take a blood pressure medication during some of my pregnancies to keep me from going into labor and it made me feel flushed and dizzy and sick! I hated it!) I asked if we could give Jo Ibuprofen for headaches now and Dr. Physical Therapist thought it would be good to try now. It really makes my heart sing when the doctor tells me that he is “pondering about” and “searching for” how, what, when or why, concerning Jo. I try really hard not to bug him, I REALLY do, well until I am frightened about something or I am feeling that something NEEDS to be done NOW! My mind never shuts off with what I can do to help or what his issues might be being caused by, or is he happy, or does he want to give up, or is he sad?? Dr. Physical Therapist is very kind and very patient with me.
Jonah still NEVER complains about ANYTHING!! When they come in to get him for physical therapy, he does exactly what they say right up to getting sick!! He is absolutely amazing to me. It is never, “I feel awful” or “I can’t”. He’ll tell me, only when I ask him, that he is feeling so-so or that he hasn’t noticed a big difference in the way he feels since starting a higher dose of medications. I see what he is feeling on his face or the way he lays absolutely still. He tries to smile and speak when spoken to, even when I know he is feeling super crummy.
This morning they connected Jo to a harness apparatus on a hoist, which rolls down the hall and supports Jo while he practices walking. The physical therapist sits facing Jo on a rolling stool and another CNA walks behind the rolling hoist, pushing it along. The physical therapist directed him with reminder words and physically helped him to move his right leg and then his left and directed him on how to place each foot. She reminded him to stand up straight and not lean. He is always leaning to one side. He spent a great deal of effort walking with this machine. He worked up a sweat. Once they had him seated he became sick.
The occupational therapist was next and they worked on strengthening the weak side of his face. She had him look into a mirror and smile. She told him to pull his smile up on the weak side of his face, and he did. She showed him how he leans his head always to the left side and she asked him to straighten it out, and he did. He got sick after this too.
I am constantly talking to the Lord about everything. I want to know that there isn’t anything I am missing or not hearing on behalf of Jo. Austin, Chandler, Michael and I went to the temple today. It is very peaceful there and I love having the chance to pray there. While Austin was praying in the temple today about Jonah’s nausea and headaches she said she saw in her mind “Red. Red lines. Some lines were wavy and others flat and they were encircling Jonah’s big toes”. She said that she had no idea what that meant, however the night before she and Tom were with Jonah and Jo was so so so so sick with vomiting and head pain. Austin asked Tom what points on Jo’s body were the reflex points for his head. He didn’t know, so Austin looked them up on her phone; she found that one of them is the big toe. In order to get Jo’s head and nausea to calm down they rubbed peppermint oil on his forehead and toes and within minutes he had relaxed and fallen to sleep. He slept that whole night. Knowing this and that I have wanted Jo to be treated with cold laser treatments, which are red streams of light, I wondered if it was Jo’s toes that needed to have the lasers used on them to treat his head. I will talk to my holistic doctor on Monday. I am curious to find out if the laser comes out in wavy wavelengths or straight or both.
They are giving Jonah pills to swallow now, instead of crushing them into a water solution and inserting them into his PEG tube. He has done very well with this, so far.
Tom got to the hospital late to stay the night with Jo tonight.
June 12, 2016
I struggle to live the life I need to outside of Jonah’s injury and hospitalization. I feel like I wear his experiences and feelings like a sweater all day and night. For whatever reason it is a struggle to get my buns into church. I always end up there every single week because I honestly believe it is where I want and need to be, but man I come up with 1000’s of reasons to stay home and get someone else to teach my Gospel Doctrine class. During the week, each time it is that time of day to study my lesson material it is like I am being asked to push a mountain. Every single time I am finished preparing, I am SO thankful I did because the material I studied strengthens me and I have become excited to share it with the class. On Sunday morning however, I again feel emotionally exhausted and the temptation to hide in my dark room, under my covers, is so strong! Tom leaves early in the morning for meetings, so he isn’t even there to push me. When I am going to bed and when I first awake are the most difficult times of day, emotionally, for me.
Today I was at the hospital as Dr. Physical Therapist was examining Jo. The soreness is still in the left of the PEG tube placement in Jo’s abdomen. Dang, this bugs me! The doctor took his time feeling around the whole area and found nothing that concerned him. The doctor said he has been searching for better ways to manage Jo’s headaches. I just love those words!! When I know I am not the only one thinking and thinking about what to do, I feel like I am given some reprieve. There is no greater gift to give to me. I constantly pray that those with the knowledge to receive the guidance and direction will be in a position to listen and then DO! My experience with Dr. Physical Therapist has been just this, he has never settled for status quo. He never has said, “This is as good as it gets”!! What a heavy burden he carries. I don’t know of very many physicians that when they are at work they are with the same 25 patients for 12 hours a day, every day they are on shift, for weeks at a time, with the added burden of being the Medical Director for that unit.
By default of there being too many patients in the pediatric unit, Jo didn’t have a physical therapist to do physical therapy with this afternoon. As a result he was feeling okay and had not had any episodes of vomiting. He was more peaceful and content as he laid there in his bed. I rubbed his feet, washed his face and put oils on him. We brought “Zootopia” and watched it with Jo and then I put in “The Blind Side” for him to watch while I went home to cook dinner for the family. Tom and I decided that we were going to tell the doctor that we didn’t want Jo to have any therapies on Sunday; we want Jo to be able to have a day of peaceful rest! Jo was given the Sacrament bread and water. We came back after dinner for just a short visit, to have family prayer, and tuck Jo in.
June 13, 2016
I was really late getting to the hospital today because I have finally been working on my daughter Savannah’s, wedding. She is getting married on August 5, 2016 and there is so much to do, which I have given very little thought to since Jo’s accident. The wedding has been more like a distant thought in the back of my mind that I might be missing something important coming up or it’s the midnight thought that comes as I am crawling into bed that I need to make a move before it is too late and I’m scrambling. Anyway, the time is quickly approaching and we have had to make some big changes in our plans due to the fact that I have little time and energy to do the DIY projects, and finish our yard. I have been trying to explain to her that we just might not get everything we want. I really don’t know why that is such a huge surprise, for many reasons, however it is the cause of much TENSION between she and I. It will be very fun and miraculous to see how all of this turns out. It will be beautiful, I’m sure!
Today’s task was the invitations. We researched our options on the internet and decided this was going to be expensive and complicated due to the fact that we needed the main announcement/invitation of the wedding and reception, and then we needed separate business card size invites to attend the temple sealing, and the ring ceremony just before the reception. We finally decided to go to one of our local copy stores where I had seen a large sign in the window announcing a huge sale on wedding invitations. Savannah and two of her sisters, Austin and Chandler, showed up just in time to go with us. We learned that we could pick an invitation out of the templates they already had or we could sit and design one at $75 an hour for design time. We had no other choice; we were going to have to be quick about designing one.
While the clerk went to see when the designer’s next appointment was, I grabbed an old receipt out of my purse and made Savannah start giving me the names, dates and info she wanted on the invitation. I didn’t want to be doing that while the clock was ticking with the designer. The clerk came back to inform us that we had lucked out and the designer had an open appointment, right then! (Good thing I had that receipt full of info now!) As we were walking back to the designer’s desk Chan informed me she wasn’t feeling very good and needed a bathroom. (Chan is 8 ½ months pregnant and had been feeling crampy and yucky, off and on, for the previous couple of days.) I just looked at her crossed-eyed and pointed her in the direction of the bathroom, as I was thinking, “REALLY???? WHAT in the HECK was she thinking when she decided to come with us on this mission????? Come hell or high water I am coming out of this place with an invitation, TODAY!! I don’t have time for this!!! ROARRRR!!!!” Savannah, Austin and I found chairs and sat down with the designer. I quickly showed her the invitation Savannah would like to design hers similar to and tell her we want the brown unbleached type paper and rustic/antique looking flowers. Savannah turns and looks at me annoyed that I am trying to be quick. The designer went right to work and Savannah helped her fill in all the blanks with her information. In the meantime, I am wondering what is taking Chan so long and am frustrated that my attention is divided. Soon, Chan comes out of the bathroom and asks for a piece of gum for the yucky taste in her mouth. I slam open my purse and find an old piece of gum in the bottom and slap it in her hand. I asked her if she needed me to run her home. She said she didn’t think so, but then in another minute she was running to the bathroom again. OH MY WORD; we are a zoo sometimes!!!! I tried hard to concentrate on the names, dates, and events we were placing on the invitations, but then I had to get up and go check on Chan. Yep, she is still in the bathroom feeling sick. I decided to call her husband and tell him to get over there and pick her up! I go back and sit down. Within a short time we are done and the designer is printing a copy of each piece to show us and approve!! In walked Michael (Chan’s husband) and I point him in the direction of the bathroom and Chandler! The invites were perfect and they were going to be printed and ready to be picked up tomorrow and the designer only charged us for a half hour!! DONE, YES!!!! Next we went to the florist to make an appointment for tomorrow morning, DONE!
Jo walked with the help of the harness and hoist again today. He experienced some sickness too. He was able to walk from one end of the hall to the other. This is such a big deal for Jo!!
Soon after Tom and I got to Jo’s room for our visit, we lifted Jo’s blanket to see that he was once again swimming in his tube feed formula and his PEG tube was out of his stomach and lying on his belly. My stomach just sank!!! Dr. Physical Therapist was still at the hospital, so I ran down the hall to tell him. He immediately came to Jo’s room and gowned up. Tom told the doctor to leave the tube out and the doctor thought about it for a moment and thought skeptically optimistic, if that is possible, that we should go ahead and go to plan “H” (I think this might be where we are in the plan line up) and leave it out and allow Jo to eat whatever he felt he wanted. He said he felt that it would be risky, in that, if Jo needed nutrition support now, it would have to come through an NG tube through Jo’s nose. This can be pretty uncomfortable. Tom asked Jo what he thought and Jo was all about pulling the tube. He has hated the tube feed. He says he can feel it as it is going into his stomach sometimes and just that sensation can make him feel sick. I’m sure it doesn’t help that he has vomited gallons of that formula. Tom helped lift Jo up to get his clothes and the bedding changed. Jo was able to stand up and hug Tom. It is always a Russian roulette whether moving Jo around is going to make him throw up or not. Fortunately, he could be placed back in bed without it making him sick enough to throw up. The doctor told the nurse to have Jo pick out anything he wanted on the menu; he was lifting the pureed restriction!! Jo picked chicken strips and plain Sun Chips with a Mountain Dew. Jo ate everything.
Jo was so happy and content the rest of the evening. He was propped up in bed with a cool wet washcloth across his forehead, one ear bud in. He had his phone in one hand, his iPod in the other and the remote to the TV on his lap. He talked on his phone to several friends. He listened to music on his iPod, and every once in a while would comment that some food on an advertisement on the TV looked yummy. He was talking to his cousin about music stations he liked to listen to on Pandora. He was cracking me up. It felt so good to see him so happy and actively participating in conversation and some normal life. I thank my Heavenly Father for this glimpse of normalcy and hope for things to come. Please Heavenly Father, I pray that we are seeing an end to the nausea and vomiting, vertigo and struggle to move and walk. At 10:00 PM he still wanted to party with us, however I knew he was going to have to get up bright and early for breakfast, dressing, and therapies, and I wanted him to get rest. He did not want us to go!! That made it so so hard to leave!! At 10:41 PM I text him, “Good night, sleep tight. Don’t let the bedbugs bite!!! I love you!!!” (This is something I have said to my kids since they were little, but the words really had no authenticity to them until Jo reported he got bedbugs four times on his mission, yuck!!!) Two seconds later he text me back, “I b d”. (I have no idea if that means something or not. He is still having a hard time with hand/eye coordination. It is hard to watch him look at his phone, try to touch a button and think he has done what he intended to do, and in reality he touched the wrong thing and he must try again.) I text him back, “Why are you still awake?” I got no response. Gosh dang, I love my boy!!!
This is the last day of Dr. Physical Therapist’s shift. I hate knowing he will not be here tomorrow, because for some reason the poop hits the fan while he is gone and I feel less secure. I asked him if all of our new plans and the new medications and the way Jo is to be pre-treated with meds and the instructions that they are to let Jo rest after eating to allow the food to stay put and . . . were all written down. He assured that it was all written down and that he was keeping himself on “Jonah duty” even though he would not be at work. That made me feel a little guilty and selfish, hopefully all would go well and we wouldn’t bother him. He assured me that the same nurse Jo had today would be his nurse again tomorrow and she was on board with all of the instructions. I feel like such a brat to put so much pressure on him. I am SO thankful for him!!
June 14, 2016
We were at the florist bright and early for our appointment. What a nice man!! Savannah had all of her Pinterest pins ready to show him. He explained that this flower and that were not going to be in season in August, but he could use another that would be just as pretty. He helped us remember that we needed to include this and that. He got right on the phone to call his supplier to see about the greenery Savannah wanted for the garlands on the table. He informed us he hadn’t done garlands in a long time. I laughed to myself and Savannah’s eyebrows knit at that comment and I mind read her thought, “He hasn’t done garlands in a long time???? Are garlands not in right now???” I kept my mouth shut! Our list of flowers was getting longer and longer. I must have started to turn pale because as we began to address the pergola flower décor he offered suggestions on how to get coupons for Michael’s Craft store and have everyone in the family buy an item with the 50% off coupons, stating that it would be far cheaper and he understood what it was like to have to put a wedding on for pennies and dimes. When all was accounted for on Savannah’s dream list, the florist got up to go total the columns. As an after thought, while he walked away, he turned and asked us if we would like him to break the totals up in what was the financial responsibility of the groom and what was the financial responsibility of the bride. Savannah was just a tad shocked at the cost, but said, “That’s not bad, considering!” The florist then told us we needed to put a deposit down in order to have a copy of the quote. I thought, “Right, Savannah . . . considering!!!” It will be interesting to see how all that turns out. It was on to Michael’s to see what we were up against.
Zach called to make a proposal for this weekend. It is his daughter Naomi’s, third birthday today and he would like to have the family drive up to Parowan Saturday afternoon for a party and then he and his family would drive down to Saint George for Father’s Day on Sunday. Oh geez, my heart just drops over stuff like this. I explained that this weekend is the first swim meet for Holland and my two grandkids, Maddox and Jed, here at Dixie State University. This meet would last until probably noon or one. It would then take approximately an hour to drive up to Parowan and we would spend a minimum of two hours there and then another hour driving home. This would put us back in town about five or six in the evening!! For me, it just wouldn’t work. I absolutely cannot think about being that far away from Jo, for one. What if he called or text me and needed me to come? I can’t wait until 6 or 7 at night to go see him and I don’t want to tell him that his entire family is going to go out of town without him. So, this puts me in a place to disappoint Zach. Tom and I have not seen his new home or town, however it is, what it is, right now. Who knows, maybe something will change my mind. My counter-plan was to celebrate Naomi’s birthday on Sunday with Father’s Day here in Saint George.
I walked up to Jo’s room and greeted the new CNA. As I was about to walk into his room the CNA stopped me with, “Miss, you need to gown up”. I stopped and explained that Jo’s family and friends do not need to gown up anymore and that it was only the nurses working with Jo and other patients on the floor, that needed to gown and glove. She told me I was wrong and pointed to the sign on the door jam of Jo’s room stating the procedures for gowning up. I again told her that the procedure changed this week and we have not gowned the entire week. She then stood up and pulled a paper out of her pocket. As she searched the paper for the information, she explained that the nurse had spoken to the infectious disease doctor and she was told that all were to gown up and then she asked if she should go get the nurse. I turned and just growled as I clenched my jaw and hands in instant frustration. I said as the tears were coming to my eyes, “I am NOT gowning up. You may go get the nurse and I will speak with her”. Just then the nurse walked up. I explained the situation, she told me, “Alright”, and then walked away. Sheesh, I am a maniac anymore!!! My father and niece were sitting in Jo’s room gowned, masked and gloved listening to the conversation. My dad said he was confused as to what was going on with Jo and why he had to gown again and was relieved to rip the stuff off.
June 15, 2016
I awoke this morning to a text message from Jonah, which contained only a link (http://www.lds.org/prophets-and-apostles/unto-all-the-world/why-do-we-have-trials?lang=eng) to an article called, “Why Do We Have Trials?” The words of this article are intense and bring me to my knees.
“Why does God allow bad things to happen to good people? Why are those who are righteous and in the Lord’s service not immune from such tragedies?”
“Although we do not know all the answers, we do know the important principles that allow those facing tragedies to face them with faith and confidence in the future.” We must have faith that we have, “a Father in Heaven, who knows and loves us personally and understands our suffering perfectly. Second, His Son, Jesus Christ, is our Savior and Redeemer, and His atonement will compensate for. . . all the unfairness of life.” Third we must believe that there is an eternal plan, which includes, “. . . a great and glorious reunion with those we have lost. All wrongs will be righted, and we will see with perfect clarity and faultless perspective and understanding.”
“There are many kinds of challenges. Some give us necessary experiences. Adverse results in this mortal life are not evidence of lack of faith or of an imperfection in our Father in Heaven’s overall plan. The refiner’s fire is real, and qualities of character and righteousness that are forged in the furnace of affliction perfect and purify us and prepare us to meet God.”
We must, “continue in patience and trusting in the Lord’s timing. The children of Israel waited 40 years in the wilderness before they could enter the promised land. Jacob waited 7 long years for Rachel. The Jews waited 70 years in Babylon before they could return to rebuild the temple. The Nephites waited for a sign of Christ’s birth, even knowing that if the sign did not come, they would perish. Joseph Smith’s trials in Liberty Jail caused even the prophet of God to wonder, ‘How long?’”
“Every one of us is called to wait in our own way. We wait for answers to prayers. We wait for things which at the time may appear so right and so good to us that we can’t possibly imagine why Heavenly Father would delay the answer.”
President Uchtdorf stated, “I know for sure that the promises of the Lord, if perhaps not always swift, are always certain.”
May I add words from an address by Robert D. Hales regarding our Savior’s atoning sacrifice, “His preparation began in the pre-mortal life as He waited upon His father, saying, ‘Thy will be done, and the glory be thine forever.’ Beginning in that moment and continuing today, He exercises His agency to accept and carry out our Heavenly Father’s plan. The scriptures teach us that through His youth, He went ‘about [His] father’s business’ and ‘waited upon the Lord for the time of his ministry to come.’ At the age of 30, He suffered sore temptation yet chose to resist, saying, ‘Get thee behind me, Satan.’ In Gethsemane, He trusted His Father, declaring, ‘Nevertheless not my will, but thine, be done,’ and then He exercised His agency to suffer for our sins. Through the humiliation of a public trial and the agony of crucifixion, He waited upon His Father, willing to be ‘wounded for our transgressions . . . [and] bruised for our iniquities.’ Even as He cried out, ‘My God, my God, why hast thou forsaken me?’ He waited upon His Father – exercising His agency to forgive His enemies, see that His mother was watched over, and endure to the end until His life and mortal mission were finished.”
I will stand with Jonah’s testimony, that these things are true. Oh my word, if Jo can hang on, then so can I. I plead for relief for Jo like a spoiled kid and yet I know that it is the Lord’s timing. I know he WILL be healed and I must hang on and continue to walk with Jo through this refiners fire. I do not go willingly at all, I honestly can’t take the pain sometimes and I run to the Lord for understanding and strength, pleading for reprieve. I know enough not to be angry with the Lord and for this I am thankful I am not having to overcome. I believe that as ugly as this gets, as difficult and dark, and overwhelming, and devastating as the experiences get within this trauma, my Savior is there for Jo, and me and we will experience equal indescribable happiness and joy along this journey too. It’s just the way it is!
By the end of the afternoon of working on wedding projects and hearing the report of Jonah’s day of total sickness, I was completely discouraged and just plain SAD. The thought of Jo’s wonderful day yesterday and being able to eat his first real food and being as happy and content as I have seen him yet within this trial, to having no success with keeping his food in, a terrible headache and not being able to walk, even a single step today, was just too freaking much!! I don’t want him to have to have an NG tube. Please, Heavenly Father, I pray for a mighty healing of his headaches and vertigo and that he will gain an appetite and can keep his food in. In the name of Jesus Christ, amen!
I climbed onto my bed with the hope that I could just cry myself into sleep and not wake until morning. I thought, “Tom will have to go see Jo. I just can’t do it! I honestly can’t do it!!! I don’t feel strong anymore. How is it my son knew I would need the words of this article today? I am praying for strength to endure. I am waiting on the Lord for another miracle and I know it can only come from Him. The doctors are doing all they know to do; we must wait on the Lord and pray for comfort.
Tom got home from work to find me on our bed. He can count on one hand the number of times he has found me in bed before it was really time to be there. The minute he knelt beside the bed and spoke, I started crying. He listened as I rehearsed all of the wedding drama, the sister drama between our girls and worst of all, Jonah’s terrible day! He really didn’t say anything; he just moved the hundred decorator pillows onto the floor and then laid down beside me. He didn’t have to fix anything, he just had to lie beside me, listen, and say, “that’s freaking hard”, and I felt like my life wasn’t ending anymore. Soon our oldest son Zach came blasting through the front door from work and wandered through the house looking for his parents. We heard a tap-tap on our bedroom door and in he walked. Slowly but surely the girls found us and wandered in too. Before long, it was time to figure out what to make for dinner. I sent Tom and Zach to the hospital to give Jo a blessing and I made bacon, eggs, hash browns, and waffles . . . we love breakfast for dinner!!!! Everyone had gone home, and my house was filled with quiet and a peaceful presence. God is so GOOD!! I LOVE my BOY!!!! #JustWakeUpJonah