Monday, July 11, 2016

June 28 - July 10, 2016

June 28- June 30, 2016

I received a phone call from our representative from the Social Security office stating that because I had been able to give her the pay stubs the man from Jonah’s work had given to me, she had discovered Jo had worked enough overtime hours that it was what he needed to qualify for another Social Security benefit, which will help significantly. Now we are at the “hurry up and wait” point in the process. I also found out that the hospital is set up to electronically transfer medical records with the Social Security Office. This is awesome, as the process will be instantaneous. The other wonderful thing is that Jonah’s medical records are condensed to a singular incident and the records are coming from a singular source. I have worked with clients that have to find medical records from several different sources and span several years. It can be an absolute nightmare to get the help they need. There is still a great chance that Jo will be denied the first time, as I am told that EVERYONE is, no matter the diagnosis or prognosis.

On Monday, as I got to the hospital I was greeted by one of the speech therapists who had spoken to me at the end of last week, about the need for help in feeding Jonah.  He was lecturing me, in a round-about way, that I had not been at the hospital to feed Jo during lunches over the previous few days. It threw me off my axis for a minute and I had to go back and think about what our conversation had been. As we ended the conversation last week I had told him that I would not commit to being at the hospital for feeding Jo at any of the mealtimes, for several reasons. First of all, I am not a speech therapist; I don’t know what I am looking for when coaching. For instance I didn’t know that you were not to give Jo a sip of fluid when he is chewing solid foods because he could choke. He can’t eat things like cereal because of this same problem. There are a million of these types of issues when a person is learning to eat again. It scares me to death!!

Second, at any given moment I could be distracted by one of a million things and be late getting in to the facility to feed him and I don’t want him to go without. (One of my kids can call me and ask me to pick her up from school and I will say, “Sure, be there in a minute.” I grab my keys and head to the car and then Austin pulls up to the driveway and starts to tell me that she is upset . . . As I’m listening to her, I hear the buzzer on my dryer through the open window in the laundry room and I run in to switch the loads. As I am just finishing pushing the button to start the dryer . . .  My doorbell rings and it is a man asking me if I would like to sign up with DISH. . . An hour and a half later I realize that I needed to go pick up my kid from school an hour and a half ago. Ya, I’m that mom!)

For whatever reason, this man had not remembered how our conversation ended or hadn’t listened to what I was saying. My head was still reeling when I left to go get food Jo would eat for lunch. By the time I got back I was hopping mad and teary. Jo was in the rehab room waiting and I placed his food on the desk in front of him then asked if I could speak with one of the other therapists. I explained the situation and she apologized for the speech therapist. She stated that she understood my concerns and would make sure that there was someone there to feed Jo at every meal. Within a half hour a schedule of competent feeders was established. ROARRRR!

Jonah has been asking to come home. I wanted to be able to bring him home for visits now, as this was one of the perks to being in this type of facility. This was a monumental issue as there were many things that needed to be worked out before I could bring him home. The biggest issue was finding a vehicle in which we could help him maneuver in and out of (as he requires two man assistance and doesn’t tolerate being jostled), and carry his wheel chair, which has a high back on it to support his weakened torso. I went to his current physical therapist and asked what I should be looking for in a car and that I wanted to try to bring Jo home for the 4th of July holiday. I told her I wanted to do a practice run on the Friday before so we could see if we could do the whole thing without help from the professionals. She told me to come early in the morning, about 8:00 AM so it was cooler for Jo and we would go try it. She then explained what the perfect vehicle would look like. It would have no running boards, as Jo needed to be able to back his legs right up to the edge of the car. It needed to have seats that were not too low, nor to high off the ground. It needed to have enough room for someone to be able to pull Jo’s bum and torso onto the seat and turn him to sit back in the seat. It needed to have room to pull his legs in. None of the cars we have were the ticket.

The idea of buying a car was truly far fetched for so many reasons it was unfathomable. However, I set out early in the week to see what I could find and what I could do about financing one. The task truly seemed impossible. I started looking at Suburbans, as they are big and roomy, but soon learned that the seating was too high and running boards seemed to come on all of the used ones I found. By Thursday I had decided I would try to make a deal on a car I had been looking at and then figure out the financing. My dad had offered to try to finance it for me, however since my mom’s passing last year he has been restructuring his finances and properties. Time was ticking away and our “trial” day was the next day!

I prayed that the Lord would go before me to make the “crooked places straight”. I needed His guidance and miracles to get this task done. As I was about to turn towards the car dealership I had intended to go to, I felt prompted to turn in the opposite direction and seek a car at another dealership I had just passed earlier in the day. As I got out of my car and began to walk towards the car, a salesman greeted me and asked how he could help me. I explained my situation and what I was looking for.  He led me to several vehicles that were too small and then took me to a van. I told him I didn’t think a small van would work, however he opened the car and showed me how easily the seats folded down and tucked away for storage. All of the seats moved forward and backwards in their position on the floor and each seat had a headrest that was easily adjusted to support your head. He encouraged me to drive it. It drove so nice and the air conditioning blew cold all throughout the entire vehicle.  The seats were a perfect height from the ground and it was easy for another person to sit inside the back and pull Jo into place. It was everything I needed! I drove the van over to Tom’s office to show him and then drove back to the dealership. I told the salesman I needed a sales slip to take to a lending institution and I would seek my own financing. I thought he would give me a hard time, but within a few minutes I had the paper in my hand and was driving down the street asking what I was going to do now. Soon I was seated in front of the desk of a friend and manager of a bank. He knew our story and I explained that I only had the option of my dad helping me with the financing, however I wasn’t sure if that was going to work either. He called for one of his loan officers to come to his office. When the man came in, he told him that I needed a loan application for a car loan and that he would be approving the loan. My relief came as tears; even as I was asking myself how I was going to make all of it work in my own finances. I was so very thankful!

I then went to my bank and pulled out the money I had promised the salesman I would give them as a down payment and drove to the dealership to tell them I had been approved. When I walked through the door and handed the salesman the check, he turned to the owner and asked him what they were going to do. I was a little confused, and I was then told that another salesman might have sold the van previously in the day. They explained that if a contract had been signed they would have to honor that contract, however if there were no papers signed than the money I brought would hold the car until my financing could be finalized the next day. It was a breathless ten minutes. The manager reentered his office to inform me the van would be mine. The salesman then asked if I wanted to take the vehicle home right then.  I never imagined they would give me the car without handing them a check for the whole amount. I could not believe I now had the car I needed for the next morning to take to the hospital for our trial run. What a miracle!

July 1, 2016

I was soooo nervous about the trial run of getting Jo in and out of the car. Jo was ready when we got to the hospital and he was excited to get going. The nurse disconnected his IV and the physical therapists moved him from his bed to the wheel chair and pushed him to the car. The move into the car went flawlessly and Jo said he felt fine as he reached for the seat belt; it was obvious he wanted to go somewhere. It was never my intention to take Jo with us, however with a trembling heart we told Jo we’d go for a ride. I told Tom to drive slow and to be careful at turns; I didn’t want to make Jo sick. We asked Jo where he wanted to go and he answered, “HOME”! Well, what were we going to say about that but, “Okay, home it is”. I felt the way I felt every time I was bringing one of our brand new babies home from the hospital that first trip home. I had precious cargo, that was completely dependent on me for his complete care and I really didn’t know what I was doing. When we got home and pulled into the driveway, Tom beeped the horn to get the girls’ attention. I jumped from the car to tell the girls the surprise that we had brought Jo home for a visit. We made Jo very sick getting him out of the car and he threw up repeatedly for about ten minutes. I panicked and began to feel we had made a huge mistake. Tom calmed me down and we cleaned Jo up and pushed him to the cool shade of the Pecan Tree in the back yard. Soon all of our kids and grandkids were swarming the yard. Jo watched as the  kids jumped  on the tramp to show him all of their tricks.  Jo had calmed down and was quietly taking it all in.

Austin and I took the opportunity to scrub Jo’s head again. He clearly enjoyed it. We changed his shirt so he could be rid of the vomit from our making him sick when we got him out of the car. We carefully pulled the sleeve around the PICC line in his upper right arm. This was our first time undressing and dressing him by ourselves.

We asked him if he could think of anything he would like to eat and he said he would like Orange Chicken and fried rice from Panda. We had to make a makeshift tabletop for him out of an old fence board, which we stretched across and rested on the armrests of his wheelchair. I then placed a foam-bead padded lap desk I use to rest my computer on in bed, on the board. We cut up his chicken into bite size pieces and then watched as he slowly and methodically spooned each bite into his mouth, and chewed by himself.  I waited to see if I needed to coach him to chew or swallow. This was our very first time feeding him without any professional near by should something go wrong and I was a freaking wreck!!! All went well and Jo ate at least half of his Panda Bowl. I was so excited!!

We battled his position in his wheel chair almost constantly. He would continually slip down the seat and would have to be pulled back to a position where his bum was placed snug to the back of the seat. As he slid forward in his seat, his feet would turn purple. The minute we would pull him back to his correct sitting position, the color would swoosh back to a normal skin tone. We tried many things like placing wood blocks under his feet and moving the belt the therapists and aids had strapped on him to move him, as a seat belt of sorts. Nothing seemed to work for long and Jonah never seemed to reach a true state of comfort. I wondered how in the world we were going to make it work for him on the 4th for so many hours. Soon we got a call from the hospital telling us he needed to be back by 2:00 for his meds. Jo didn’t want to go back, however we promised we would do this again soon. We got Jo back into the car without making him sick, however we made him sick again as we got him out of the car at the facility. Tom got him cleaned up and tucked into bed. Tom said he fell asleep almost instantly; it had clearly been physically taxing on Jo.

We brought Jo home Saturday and Sunday too, as I would receive a text daily that said, “Hey, where are you? You should come get me and bring me home”.  We noticed too that Jo was beginning to be getting sick more and more over these days and it was more than just with movement. I was getting worried that maybe his trips home were too taxing. Sunday I got a substitute to teach Sunday school for me and I went to the facility to attend the church branch they held there. My daughter Chloe came with me and I was so glad I had her there. For the hour and 10 minutes of the meeting we took turns standing behind Jonah, holding his head up so he could see what was going on in the meeting. He had thrown up everything in his stomach right after they fed him so we had a blue barf bag hanging from his chair, in easy reach just in case. My mind was swirling with the possible reason why his episodes of sickness were escalating again and Jo looked like he felt bad. I questioned the CNA and nurse about the circumstances before his sickness and was his food something he didn’t like. Nothing could answer the, “WHY?”

Monday July 4 I woke with a heavy heart. I was worried about the long day and wondered if we shouldn’t wait until evening to bring Jo home. As yet we hadn’t figured out a truly comfortable place to have Jo rest for the hours he was at home; his wheel chair clearly was not something he could sit for hours in, it was just a ridiculous piece of equipment. As we were at the morning parade I received my regular text from Jo to come get him. I called the hospital to get a report on Jo’s evening and morning and was told that he had thrown up a few times just before bed and again after they fed him breakfast. I questioned them again as to what might be going on; were they moving him too fast, had they tried to feed him something that was a wrong texture or taste, had they started or stopped any medications I was not aware of? This is when I was hit with the bombshell!! The nurse informed that an antibiotic had been started on Thursday. “FOR WHAT?” I asked as I panicked that he had another infection from his CRE (anti-biotic resistant bacteria) they hadn’t told me about. I was told he didn’t have an active infection that the nurse knew about and she was under the understanding that they were treating Jo because they had found a CRE in his sputum. I became livid as all of a sudden the “lights came on” for me. I had wondered why the gown, glove and mask table outside Jo’s room had been dismantled and taken away some days ago and no staff was dressing down to enter Jo’s room anymore. The home didn’t want to have to have their staff dress down, so they were going to treat Jo with antibiotic. I asked the nurse how long he had been on the antibiotic. She responded since June 30, so Jo had been on it for 5 days. I asked what the drug was called. It was a heavy broad- spectrum antibiotic known for making patients sick.  I asked the nurse how often he was given the antibiotic and when his next dose was due. I told her I didn’t want her to give him anymore. I told her that I was never consulted on this situation and would never have given permission to give this antibiotic, as the ramifications of doing so could be life threatening to Jo. I told her I wanted to speak to the doctor that ordered the medication. The nurse gave me the doctor’s office number. I told her that they had abused a patient by giving him the medication by making him ill and preventing him from keeping what little food intake he could get in, in. They also took his voice away by not consulting with me.

I called the doctor’s office number and there was no answering service option. I don’t know why I thought I would be able to get in touch with this man, I never had been able to in the past. My next thought was to call the neuro-rehab floor and talk to the doctor on that floor. If I was lucky, the doctor I was looking for would be on. He was not, but after speaking with Jo’s old doctor I felt confident in having the convalescent hospital discontinue the use of the antibiotic. As the moments passed I became more and more upset at what had been done behind my back and the immediate suffering it had been causing Jo. I asked the doctor I was speaking to, to try to call the doctor responsible. He said he would try, but since it was the 4th of July, he couldn’t promise anything. I asked that if he heard something, he would text me and let me know.  Approximately five hours later, I received a text stating, “No response so far”. And then almost immediately after, “He did call me right after I texted you”. I asked, “What are his thoughts?” His text said, “I just let him know your concerns.” I have not heard a word from this doctor, at all since.

I called the managing nurse of the convalescent hospital next and told her the story and how I felt about what had been done. She apologized and said she would go tell them not to give Jo another dose and she would destroy the medication. I told her that this had better not EVER happen again, EVER!!!

Tom headed over to the hospital as soon as we got home from the parade, as I started our traditional breakfast of bacon, sausage, scrambled eggs, waffles, and orange Julius. I was absolutely not in a celebratory mood at all, what I really wanted to do was go back to bed and hide from the worry and stress in my darkened room and sleep. The anxiety and stress of Jonah’s care at the new facility, the vomiting again and the stress of getting Jo’s needs met at home were weighing so heavy on me. Not long after Tom left to get Jo, he came back. He said Jonah had fallen asleep and he had left a note in Jo’s hand to call us when he awoke. We ate breakfast and were cleaning up when Jonah text us to tell us to come get him. Tom and Jon left to get Jo and I was sent to look for a “zero gravity chair” to seat Jonah in while he is home.

The week before, as Tom and I were leaving the hospital, a group of CNA’s and a nurse came into Jo’s room to get a clean catch urine specimen. I asked what they were doing that for and was told they wanted to see if Jo still had the CRE. The nurse that night explained that they had a hospital full of immune-compromised patients and they needed to know so they could keep everyone safe. WHAT???? I told him we already knew he still was a carrier for the bug and that he always would be. I told him that they would definitely find the bacteria in Jo’s sputum, as it was a bacterium that had sat around his trach when he had that. I explained that Jo was asymptomatic and that the infectious disease doctor said unless he began showing signs of infection, he was to remain untreated, as treatment for a microbe, which is not actively involved in an infection process only makes the bug become more resistant to antibiotic. Then we would have nothing to treat Jo with should he become ill with the bacteria!! The nurse then informed me that anyone leaving Jo’s room could potentially be a carrier and that because we, his family, chose not to dress in the gowns, gloves and masks, we needed to be careful about what we touched outside the room. I told him that I understood that and we would be careful to wash and watch ourselves. He then told me that the preliminary report had come back relatively clean, but they were waiting for a conclusive report after the incubation time. I left the hospital that night having given the nurse instructions to let me know the results as soon as they were received, and then thought nothing more about it.

The zero gravity chair was an incredibly brilliant plan. We were able to set him up and lay him back easily. While I was so stressed to have him home for so long, it was such a pleasant afternoon. As evening came, Jo expressed a need to use the bathroom. The stress came back in a flash of a second for me, as getting Jo into one of our bathrooms is a feat. Tom and the son-in-laws transferred Jo to the wheel chair and then maneuvered the chair across the lawn and into the house. The wheel chair is just a joke. The leg rests are too long and drag the ground making it almost impossible to push the chair along the uneven levels of the lawn and the handle on the back of the chair becomes unlatched when pulled with much exertion sending Jonah’s torso backwards if it isn’t caught. Once in the bathroom, Jo asked Tom if he could take a shower. Tom, of course, wanted to give Jo this courtesy and asked the brother-in-law to run and get a plastic lawn chair to use in the bathtub to support Jo. Jonah loved the long shower and Tom was able to handle it all on his own. Soon Jo was out on the lawn again, ready for the firework show.

The two oldest granddaughters, Emery (3) and Izzy (2), both parked themselves next to “Unka Jo”. They wanted to hold his hand and love on him. They talked to him like they do their baby siblings. At one point, Emery came running to me yelling, “Gramma, Gramma, your son can tot (talk)!!! Do you want to touch him?”  Her excitement was so genuine and contagious.. Jonah stayed with us until 10:45 PM and then the boys took him back to the hospital exhausted. Thankfully, without the 2:00 PM dose of antibiotic, Jo was feeling reasonably good.

July 5, 2016

Jonah had his first outside doctor appointment since his accident. He was seen at his orthopedics’ office and given the okay to stop wearing his boot for the ankle he had fractured in the accident. Jo tolerated the trip well!! I grabbed him some Orange Chicken from Panda and then followed the medical transport back to the convalescent hospital.

July 6, 2016

We went to Jonah’s neurology check-up. He saw the PA, John. He stated that Jonah was an excellent candidate to get his skull replaced.  We told him that Jo’s sister was getting married on August 5th and he was supposed to be one of the groomsmen. John jumped at that information and said, “Let’s get it done ASAP then!”  John was surprised that Jonah was not walking yet, given how well he looks.  We had to explain Jonah’s setback of the vertigo, nausea and vomiting. John told us that having Jo’s skull replaced is going to improve the vertigo, nausea, vomiting and even the weakness in his left side. He explained that it is very weird that the brain knows that the skull is missing and is not firing right because of it. This was excellent news. We all left feeling energized by all of the good news. Within a few hours I received a call from the surgery scheduler in the neurology office; Jonah is getting his skull back on July 19th!!!!  EXCITING for sure!!!!

I inquired to the convalescent hospital’s social worker as to how to go about getting a hospital bed, wheel chair that fits Jo, shower chair and other medical equipment Jo may need. She explained that a prescription for each piece needed to be written by Jo’s doctor. She then told me that she would contact an organization in our town that may have access to this equipment that they would let us use until we don’t need it any longer.

I received a call from the representative from the organization today. She told me she has a hospital bed frame we can use and she would continue to look for a shower chair and wheel chair. In the meantime, I will continue to work with Jo’s doctor about getting what I can through our insurance.

July 7, 2016

I spent the morning trying to figure out how to make the centerpieces Savannah wants for the 15 tables at her reception. The florist had quoted us $60 a piece for the wreaths and $40 per bouquet, and that’s with us providing the vases. So, $100 per table for floral arrangements . . . we can’t do that!!!! I called my daughter Chloe to ask her if she minded if I came and cut branches off of her bushes, she agreed. I stopped by the Dollar Tree and bought a green floral sponge and headed to Chloe’s.  I wanted to make one to see how long the wreath would last sitting on my dining room table, so I would know how far in advance I could construct the wreaths before the wedding. Within 30 minutes Chloe and I had created a beautiful wreath, however when I picked it up off the table, the foam ring I had used to shove the branches in broke into four pieces. Okay, I know what I’m doing; now I just need to find a more durable foam to use. On the way home, I stopped at Micheal’s Craft store to see what I could find that would be more sturdy and then Costco to see if I could find a bouquet with colors similar to what Savannah wanted the florist to create. I found a perfect bouquet for $15 at Costco and I picked a round sturdy foam from Michaels and went home to reconstruct the wreath. I was so excited that the wreath worked this time and I shoved the bouquet in our vase and set the two together the way Savannah had dreamed!! Just one more test, would picky Savannah approve? I no sooner had it put together and Savannah walked through the door for lunch, SUCCESS, she loved it!!!!! AND I saved us $80 a table.

We brought Jonah home again this evening. He was a little upset that I had not been in to see him during the day, even though I kept him informed, through texting, about my doings and whereabouts. When we got him home we placed him in the cool temperature of the living room and fed him two soft-shelled corn tortilla tacos. He did a very good job of eating them and once I had cleaned him up, I left him in the living room with the men to listen to a comedy station and “bond”, while I went out into the yard to tend grandchildren, so Chan and Mike could go on a micro-date to give Chan a break for a bit. About an hour and a half into it, Austin came out of the house saying that Jonah had a headache and needed some meds. I told her to give him some Ibuprofen, however before she could give it to him he had thrown up all over himself. It broke my heart. Into the shower Tom and Jo went, again using a lawn chair to support Jo while Tom let the warm water run over Jo. Tom said that while the water was running over Jo his PICC line fell to the shower floor!!! This was not good at all. There was no way to hook him back up to his nutrition and none of his IV push meds could be given to him, which included his anti-nausea, headache med and fluids to hydrate him again. I called the nurse at his facility to tell her what had happened and asked what they could do through the night until we could get him to the main hospital to place a new line. (This port/line is placed through an ultrasound guided needle and is placed into an artery.) The nurse assured me that should Jo need, she could place an IV for meds, however she could not give his TPN nutrition through an IV line and she would try to contact his doctor right then via phone call and email.

Eventually, his head calmed and Tom dressed Jo and took him back to the hospital. Jo was exhausted when he got there and Tom made sure he was tucked comfortably in bed and instructions were given to not disturb him unless he awoke. I called the nurse a few hours later to see if the doctor had responded and she said he had not. Where is this doctor?? I have yet to speak to him about anything!!! She also informed me that Jo was resting comfortably. We have learned that too much laughing can cause a headache for Jo.

July 8, 2016

I called the convalescent hospital first thing to see if the doctor had given the orders for Jo’s new PICC line. The doctor had still not responded and the Managing Nurse talked to me about her concerns with the TPN and his meds. I told her I was working on trying to find another internist to follow Jo as none of us were getting anywhere with the current one. Within another hour our regular PA called me with the name of an internist who agreed to see Jo and handle his case even though Jo couldn’t be seen in his office until the 27th of July. I can’t tell you the relief I felt that we now had a doctor responding. The nurse reported that Jonah had again thrown up his breakfast after the CNA’s had turned him. They had not been able to get an IV started in his arm and now had been without any meds for almost 24 hours. At 3:00 PM I received a call from Jonah’s nurse stating that they had had to call 911 for Jonah because his blood pressure was 191/117 with a rapid heart rate. She informed me they were transporting him to the Emergency Room. I cannot even express adequately what I was feeling. “What in the heck is going on??” is all I could think. Fear, anxiety and a feeling of helplessness overcame me as I thought of the lack of help, and even abuse and neglect Jo was receiving at the facility. What can I do to help my kid??  My insurance was being impossible. Jonah’s abilities and health have all regressed in the two weeks he has been in this facility!!!!

Once Jo was in the ER they had an IV started and anti-nausea and headache meds pushed within 20 minutes. Tom got there before me and Jo was resting comfortably by the time I arrived. I checked on him and then left to go find another facility to place Jo. I couldn’t take one more minute at the other one. Jonah was being neglected because his level of care was greater than that facility was capable of handling. I could find no facility willing to take him because of his TPN. I notified Tom of this and he conveyed this to the ER doctor. Within another hour another doctor was brought in for a consult. This doctor determined that Jo needed to be admitted to the medical/oncology floor to stabilize before he went to any facility. Once on the floor, the medical staff flocked to him. Tests were ordered and a sitter was assigned to watch Jo. Jo fell asleep early as we sat with him. We were told his new PICC line would be placed in the morning. I was so peaceful knowing Jonah was in capable hands. I kissed him goodbye and went home to fall into bed.

July 9, 2016

I started my morning by contacting the social workers on Jo’s hospital floor to gain their assistance in trying to get the insurance to let Jonah back into the neuro-rehab unit. I then called my insurance company and was connected to a very nice man who patiently listened to my whole story. He then placed me on hold to talk to the appeals department. He got back on to say that I should try to appeal the decision to move Jonah to the next level of care, the convalescent hospital. He told me too that Jonah still has 10 more days available in the neuro-rehab care facility and he should have been able to stay longer last time. Oh my word, the frustration of it all gets so overwhelming.

I then called the social worker on the floor where Jonah is right now. She told me she had contacted our insurance company and was told directions to maneuver their website to download the appeal form. She informed me that it was my job to appeal, not the hospital or doctor, as they both have an interest in appealing their decision. I had no idea it I had any power to appeal. What in the heck was the neuro-rehab social worker doing? Why hadn’t she guided me through this process? I am truly blown away. I downloaded the appeals form and have called various doctors that have been responsible for Jonah’s care to give recommendations the insurance company is requiring. I have also looked through all of Jonah’s medical records and pulled out all of the History & Physicals, Consults, and notes from the various therapists that have worked with Jo to include as I fax the info to the insurance appeals board. I was also instructed to write, “EXPEDITED APPEAL” so that the appeal is looked at within 3 days.

Tom and I consulted with doctor following Jonah on the medical/oncology floor about his concern with Jonah remaining on the TPN and the damage this can do to his organs. He explained that he wanted to place a NG tube through his nose into his small intestine, to bypass his stomach and give it a rest. I really didn’t want to do this to him, however we really had no other choice. Within a few hours the tube was placed and ultrasounds were done to assess his liver and gallbladder. His liver looked good, however his gallbladder showed sludge. The doctor explained that many people have sludge in their gallbladder and it remains functional, however this triggered a thought process for me based on my other children’s health histories. I have had two children have to have their gallbladders removed because of serious issues due to medications damaging their gallbladders. Why wouldn’t this not happen to Jo? I asked the doctor if he thought we should order a HIDA scan to look at the function of Jo’s gallbladder/liver. He agreed that we should do one and one was ordered.

The doctor told us he wants to place a permanent feeding PEG tube directly into Jonah’s small intestine if Jonah shows improvement with the temporary tube. He told us that Jonah’s nutritional issues have gone on too long not to decide to do this next procedure.

Jonah has made a complete turn-around since receiving the care he has in the hospital. He has begun to speak on behalf of himself and has been asking to use the bathroom. All I could think of was that Jo had just given up at the convalescent hospital because no one would respond to help him. This just breaks my heart; I sincerely can’t believe what Jonah has endured.

A few thoughts have been rolling around in my head. First, when a house burns down and you call your insurance company, the company doesn’t’ just take your word or your pictures or the firemen’s word that the house burned down and money is needed to replace the damage. The insurance company sends out an insurance adjuster to see the damage and gather information. In some situations they even send out an investigator to rummage through the rubble to find clues and proof of the authenticity of the damage and find the reason for the disaster. This is just a house, a thing!! Why doesn’t a health insurance company send out an “investigator” to see the patient? Have them sit with the patient, watch the patient in their current environment and then take all of the medical records and connect the dots and assess what is the best course of action to bring the patient to his most capable and healthful self. In the end, doesn’t this benefit the insurance company buy minimizing costs? The whole ER visit and probably these last 3 days and the following 3 days of Jonah being hospitalized could have be avoided and possibly the two weeks he has endured in the convalescent hospital regressing would have been spent healing and moving in a forward direction.

My second thought is as a social worker advocating for patients in their unit, would it not be one of your common responsibilities to help the patient gain access to their health benefits by being a mediator, facilitator, and educator? Stepping in when it is obvious that the patient or family member may not understand that there could be a way to get the things they need. Generally speaking, the patient and his family are not at their best functioning self and need to be directed and counseled through the process. Thank 3rd floor social worker for stepping up and guiding me and advocating for Jo.

My third thought is that I have spent a great deal of my life, the majority in fact, hating the night. It isn’t a mystery to me why. Most of the abuse I endured took place in the night. When my children were little and sick, nighttime seemed to bring the worst of the symptoms, especially when fevers and coughs were involved, and there was little access to help. My anxiety/panic was always worse at night. During my hyper-vigilant years, I would be awake for days before exhaustion would set in and I could sleep through the panic. Being able to get outside when I was panicky would allow me to breathe better and gain control and freedom from the claustrophobic of the indoors. Night would not allow being outside, it wasn’t safe; I would pray for the dawn and the peace, freedom and help it would bring!!

As I have experienced the trauma of Jo’s accident and recovery, I have been experiencing the exact opposite. I can’t wait for the night when I can sleep and “go away”. Some nights are difficult to get to sleep, as my anxiety is consuming, and I pray for comfort and sleep. As I lay my head on my pillow I tell myself, “I’m not getting up in the morning!! I am going to just stay in bed and sleep until it is ALL over”. It takes prayer and courage to get myself out of bed and going most mornings. I want to lock myself in, keep the shades closed and create darkness to hide in. There is a thought I have that will get me moving, “I would hate not having the ABILITY to get out of bed and do those things that I want and need to! Thank heaven I have an able-body and an able-mind!”

There have been many many dark moments of despair over these past few months and weeks. I have felt absolute consuming anger and sadness and times when I thought things were just so out-of-control I could hardly bare it. In one of those moments a few days ago I angrily picked up my phone and yelled “Okay, what would you teach me today? What could possibly make me feel peace?” As I hit my music button the following words came sweetly and serenely through the speakers of my car:

1. Be still, my soul: The Lord is on thy side;
With patience bear thy cross of grief or pain.
Leave to thy God to order and provide;
In ev'ry change he faithful will remain.
Be still, my soul: Thy best, thy heav'nly Friend
Thru thorny ways leads to a joyful end.
2. Be still, my soul: Thy God doth undertake
To guide the future as he has the past.
Thy hope, thy confidence let nothing shake;
All now mysterious shall be bright at last.
Be still, my soul: The waves and winds still know
His voice who ruled them while he dwelt below.
3. Be still, my soul: The hour is hast'ning on
When we shall be forever with the Lord,
When disappointment, grief, and fear are gone,
Sorrow forgot, love's purest joys restored.
Be still, my soul: When change and tears are past,
All safe and blessed we shall meet at last.


July 10, 2016

I went to church today and then ran to the hospital to be with Jonah. We spent 7 hours together. I held his hand while I read to him the first half of the book, “The Message”. It was wonderful and one of the most peace filled days in many, many weeks!! ! I am so thankful for rest from my burdens! It was beautiful to see Jonah not suffering. He was active in pushing his nurse button for help using the bathroom, this is the first time I have witnessed this! I LOVE MY BOY!!!! #JustWakeUpJonah


  1. I am so grateful for everything you have written. I am grateful for your testimony and for your family. Prayers are answered and Jo will continue to improve. Sending God's blessings to all your family.

  2. Thanks, Heather. I have been looking forward to reading of Jonah's progress, hoping and praying that he would keep improving and that you would be able to continue bearing the heavy load. You've been through so much! It is incredible what people go through, Jonah as well. What a strong and fearless spirit he has, such determination! Love that book you're reading. I'm so excited that things are looking up, and progress is being made. You are one awesome mama. Stay strong. Love and hugs!

  3. Heather, I have been following your journey for quite some time and I can so relate to so much of what you are going through! My husband has gone through A similar medical tragedy and I am now his full time care giver and mom to our two beautiful girls! You are doing amazing! I can feel your heartaches and your triumphs with each incredible post! I would love to offer any support, or just be someone who truly knows what your feeling! I'm here in St. George!
    Rebecca Iloilo

  4. Heather, I have been following your journey for quite some time and I can so relate to so much of what you are going through! My husband has gone through A similar medical tragedy and I am now his full time care giver and mom to our two beautiful girls! You are doing amazing! I can feel your heartaches and your triumphs with each incredible post! I would love to offer any support, or just be someone who truly knows what your feeling! I'm here in St. George!
    Rebecca Iloilo

  5. Just a thought, but how about using a soft neck brace when moving Jonah.

  6. My husband and I visited your ward when we were visiting St. George on a birding trip. You bore your testimony that day; it was not long after Jonah's accident. Your husband and your ward were so welcoming that day. We felt right at home and became interested in following Jonah's progress. We have prayed for him and for your family. I feel that he may not even by alive if it were not for your care and sacrifice. What an amazing mother!!!