Thursday, June 2, 2016

May 31 - June 1


May 31, 2016

The first thing Jo said to me when I walked into his room today was that he was ready to go home. He said he had talked to Tom on the phone and Tom had told him they were going to barbeque. He assured me he would come back to the hospital after. He is a little stink! He doesn’t know how that rips my heart out.

Jo did not enjoy his first real meal!!! He only ate a few bites! Jo is throwing up everything! It happens with just about every movement. They had to start an IV to hydrate him again this evening! This is just so discouraging. He needs the nutrition and high calories to give his body something to use to heal and give him energy to move. He can’t move to learn to walk without getting violently ill. When I go in to see him, he doesn’t move his head even a micro of an inch. He said that he can’t watch videos or movies because that makes him sick. What to do? Jo’s nurse told me she is wondering if it might be an issue with the formula too! She also wondered if his lack of wanting to eat was due to not being able to smell and she told me she was going to see if they would test that tomorrow. I think, now I am not a doctor, however if I am on a spinny ride and feeling dizzy and nauseated, I am not going to want to eat even my favorite dish and I don’t have to be “sensitive” to the food going into my stomach to have it come flying back out!!! I am trying to hang in here with all of this, I really am, however there has got to be someone out there that knows what to do with this. It is just not working the way we are doing things right now and our 40 days, which the insurance says Jo has to be in this facility is now 29 days! Heavenly Father, I pray that inspiration will be given to those who have the knowledge, and authority through their license, to give the treatment necessary to reverse this great issue. In the name of Jesus Christ, amen.

I remember, Dr. Fox, Jo’s initial neurosurgeon, tell me that Jo may get through the initial trauma, however if his lungs or some other thing stops doing what it is supposed to do, it’s over!! Jonah has been living this nightmare of heart arrhythmia, extremely high blood pressure, his body not eliminating fluids, infections, high fevers, and now vertigo and nausea!! All has been resolved, so I claim it, his vertigo will be resolved too! It has to in order for him to progress!

Brooklyn, Holland and Heather Saige have all been in Mexico for the past 5 days and they were excited to see Jo and bring him the shells and other memorabilia they brought back for him. This is the first time they have seen him so awake and the first time they have been able to talk to him and have him talk back, since before his accident. They were quite angry with me that I hadn’t text them to tell them Jo’s trach was out and he was talking!!! They had to find out from our sweet friend they were vacationing with, showing them the video Zach had posted on Facebook with Jonah waving and talking. Almost immediately after hugging the girls Jo asked to take each one of their hands. He then guided their hand up to and through the large indentation in his head where his skull and piece of brain are missing. As they rubbed together, Jo said, “All of this just because I didn’t wear a stupid helmet!”  I just tried not to cry. You’re right son, and that’s the part I need you and everyone else to remember, FOREVER! Oh my word, I feel like I want to just scream and scream and scream to release some of the pain locked in and clenching my chest from watching my child suffer, and suffer, and suffer, and bare it with such patience and never a complaint!!! I feel so weak sometimes and think, “I just can’t take it anymore!” And then I have to suck it up and step back into the game because my son is showing me how to be brave!!!

Back when my oldest son, Zach, was 10 years old he was severely burned on 27% of his body (I have no idea how they came up with that number, but we’ll go with it). It was a cold day in January and I had just picked my kids up from school. They were all in the kitchen busy making snacks to fill their hungry-after-school-tummies! My 6 year old was pulling her bowl of Top Raman soup out of the microwave and the bowl started to collapse because it was so hot and was burning her hand, so she went to toss the bowl onto the counter. Zach was standing in the way and the soup poured down his neck, back, butt and over his right shoulder. He yelled and ran across the kitchen trying pull his sweatshirt away from his body! His sweatshirt insulated the heat against his body. It happened so fast I hardly knew what had happened. I ran him to the bathroom and pulled his shirt and pants off and threw him in the shower to run water on him. His skin was just falling off. Zach and Chloe were thrown into an ambulance and taken to a burn unit, in a city I had no idea where it was, and I was told that I had to wait for someone to take me to, as I was not to drive!

An hour and a half later and after checking at two hospitals, my brother-in-law and I finally found where they had taken my children and I was guided into Zach’s room. He was lying on his belly with a special air type blanket over the top of him. He had blisters on his ears, neck, back, and hands. There were blisters on the blisters!!! It was the first time one of my babies had an injury that I had absolutely no ability to help heal through holding and kissing them and I thought as I told him to pray to his Heavenly Father for anything he needed, that I was grateful I was not trying to teach him, for the first time, that he had a Father in Heaven or how to pray!!!

The first 4 days in the San Bernardino County Burn Unit were spent being scraped and re-bandaged twice daily. (I was just a few months pregnant with Savannah.) The nurses would roll Zach into a special room where I stood just outside the door. He would tell the nurses to give him a minute to pray and then they could start. All I would ever hear was just some tiny little cries from him, while I stood outside the door feeling as though I was going to faint away from holding my breath. On the fifth day they took Zach to surgery to graft his neck, shoulders, right chest, spine and buttocks, using freshly healed skin off of the full length of his flanks. When he came out of surgery and awoke, the first thing he said was, “Let’s pray to thank Heavenly Father that I am alive,” and he offered the sweetest most sincere prayer.

During this time in my life I had battled anorexia and panic/anxiety disorder severely, as I had been dealing with childhood abuses. Tom and I hadn’t been out on a date that involved eating in a restaurant, being in crowds, or a theater or pretty much anywhere, in about 5 years. I handled everything I needed to however, it was excruciating to get whatever I needed to get done, done outside of my home. Life was just exceptionally difficult for me to push through. Once Zach was healed enough to go out in public we decided to take the kids to Disneyland. Up until this day, I would sit outside the ride and wait while Tom took the kids on the ride because it was too hard for me to be in the lines and then locked on a ride I couldn’t just walk away from if I felt I wanted to. As I looked at my 10 year old son on this day and considered what he had just taught me in bravery through his horrific experience, I told myself I could freaking ride a stupid ride at Disneyland and act like a gosh darn mom!!! His courage and determination and patience changed my life. . . and guess what??? I had fun and it pulled me out of that debilitating anxiety!! My babies are amazing examples and teachers for me!! It was a miracle healing for me!! I still get panicky in some situations, but nothing like I used to and it doesn’t keep me from the things I want to do.

June 1, 2016

I spent my first hour and a half on the floor getting answers. Heather Saige went into Jo’s room to sit with him while I tried to find people to tell me about Jo’s day and get his “stats”. Jonah’s nurse told me she had had a personal incident with vertigo once in her life. She has incredible empathy for what Jo is going through. She told me that when she went into his room this morning, Jo looked so sick. She decided then that she would give him his anti-nausea and just a few of his other meds and then not move him or bother him for a bit.  They began his feed again and then gave him a shower. He made it through the shower and then threw up, so they had to clean him up again. Then they brought in breakfast, he ate a little and then they took him to physical therapy. Towards the end he threw up. They cleaned him up again. One of the CNA’s asked Jo if he would try to drink a protein type drink, Boost. Jo didn’t like the name of it and told the CNA that he “can’t drink that”. He told her something about him having an enlarged aorta. (That was an issue he had had a few months before he went out on his mission from a hit he took during a rugby game, however it had been resolved before he left on his mission.) She then asked him if he wanted an ice cream shake. He decided that he might like a vanilla shake. He drank most of that and it stayed down for quite a while. Speech therapy came in at lunch and began feeding him his added diet of pureed food, which happened to be potatoes and chicken. Jo ate a couple of bites with the speech therapist and then the speech therapist had to go help other patients, and the CNA took over and tried to feed him some more. Jo wasn’t terribly interested. 

All of the reports I get from the staff are that Jo is having lots of conversation during the day, both in English and Spanish, and does exactly what he is told, despite being so terribly sick.

Jo’s nurse stated that she was perplexed as to why Jo was being treated as though the issue was in his stomach, as though the nausea was a result of a stomach problem. She told me she felt the nausea was a result of the vertigo, which is a head issue. She said she went to research what medications could be used to help treat the vertigo and came up with one to try, Meclizine. She contacted the doctor and received a script for that for Jo. I told her this was what I was hoping to help with when I suggested to the physical therapy doctor to try a Scopolamine, which Jonah has had behind his ear for the last week. I don’t think the Scopolamine has helped at all and so I asked the nurse to look up Meclizine so I could see if it was related in chemical make-up and what it treats, to Scopolamine, if it was, we needed a different one.   From what I read and with my limited medical experience I felt it was worth a try.

Jo had his first dose of Meclizine at 5:00 PM. His nurse told me the only way to insure Jo received the medication every 6 hours was for her to emphasize the importance of giving that medication to the new nurse coming on for the night shift and then that nurse telling the next nurse. I asked her if it was written down somewhere that Jo needed that medication. The nurse assured me it was written down and then showed me it was on his medication list, at the very bottom of the list, maybe this is the issue. I don’t understand that.

When I finally entered Jo’s room I walked over to him emotionally exhausted because of the previous hour and a half of info. His garment had splashes of dried vomit on it. He looked exhausted! I laid my head on his chest and Jo wrapped his arms around me and held me tight has he rubbed back and forth across my back with his hands and said, “Hi mom!” Mmmm the warmth and sweetness of his hug was invaluable to me!!! He smiled, careful to not move his head! My heart squeezed inside my chest until I almost couldn’t breathe. I asked, “How are you son?” He rocked his hand, up and down to show me he was “so-so”. He touched his head and told me it hurt his head tremendously when he coughed or puked! Sheesh, there are just no words. Only God knows what is wrong and I have to believe He has Jo in His hands. I know of no other place to look in times like these.

I had told the girls that we would go eat and then hit the dollar movie on Main St. – Miracles From Heaven, at 8:45 PM. Two of our friends offered to sit with Jo while we were gone. This made the date with my girls so much more peaceful. I keep being told to, “Take care of yourselves, or you’ll end up beside him in the hospital”. It is difficult to manage life, the mental more than the physical, being constantly torn in half between the needs at home and my girls, and the needs of Jo! What is that supposed to look like? I wish I had my mom, she would know what to do. I feel paralyzed sometimes!!

By 11:00 PM Jo had thrown up four more times; each time it was because they had moved him. Brooklyn was staying with Jo through the night. Brooklyn walked in as Jo was being changed again from vomiting. As the nurse finished she told him they would let him rest for a bit and then come pull him back up to the top of the bed. Jo told them, “Just do it now, get it over with”. He was able to sleep until 3 AM and was still awake at 6 AM when Brooklyn left to come home to rest until she had to go to work.  When Jo’s nurse called me this morning, she told me when they came in to turn him in the night, Jo told them, “No” and they respected that and he kept the food in his tummy all night. Way to go baby, you don’t have to obey ALL of the time!! You have a sound mind son, given back to you by God in your healing, you keep using it! No one believed you would be where you are right now or even at ALL!!! And yet here you are, there is no other explanation, but a MIRACLE! God WILL finish what He started! When I could hardly raise my head from bed today, I found strength in these scriptures, Jeremiah 29:10-14:
  
10 ¶For thus saith the Lord, That after seventy years be accomplished at Babylon (or 50 days in the hospital) I will visit you, and perform my good word toward you, in causing you to return to this place.
 11 For I know the thoughts that I think toward you, saith the Lord, thoughts of peace, and not of evil, to give you an expected end (Jonah’s healing and all of our spiritual strengthening).
 12 Then shall ye call upon me, and ye shall go and pray unto me, and I will hearken unto you.
 13 And ye shall seek me, and find me, when ye shall search for me with all your heart.
 14 And I will be found of you, saith the Lord: and I will turn away your captivity (my sorrow, my fear, my anguish at what Jonah is suffering) and I will gather you from all the nations, and from all the places whither I have driven you, saith the Lord; and I will bring you again into the place whence I caused you to be carried away captive.

AMEN!!!!

At 8:30 AM I called the unit and left a message for the physical therapy doctor to call me; I think this is why his nurse called me. I want to know whom I need to get up there to see Jo for his vertigo. All I can think is, “Please God, help me know what to do to help him!”

In the movie, “Miracles From Heaven” there was so much I could relate to! I loved these statements:
·      “Faith is really the only true shelter”
·      “Not everyone’s going to believe, and that’s okay, they’ll get there when they get there.”
·      “Albert Einstein said, ‘You can either live as though there are no miracles or live as though everything is a miracle.’”

I LOVE MY BOY!!!  #JustWakeUpJonah

2 comments:

  1. Thanks so much for sharing your journey and struggles - truly inspiring for all of us. Our family will fast for Jonah this Sunday, along with yours. Carry on!

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  2. Gosh you are a beautiful soul and spirit Heather!! My word!! And thank you for sharing things that you have struggled, I remember you telling me about the microwave incident, but had no idea the anxiety etc you endured, would have never known, you are always on your game and so strong even when you don't feel like it, trust, you are amazing (and I never use that word, it's over-used so much don't ya think? But if there's one definition of "amazing", it is you my friend!) And I still can't believe he's busting out Spanish, wow, just wow! Get your rest sister and I know you're smart and selfless enough to not forget to take care of you.
    L, Catherine

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