Faith Journey, Medical Issues, Opsoclonus Myoclonus Syndrome

The Prophecy and The Call

The Prophecy and The Call

The Prophecy and The Call. Last December, we were at church and getting ready to worship. We have been church hunting for a while and landed on Christian Fellowship. Honestly, we knew the pastor and his wife, as well as a few families. We had not been going very long, but it was different than what we were used to attending. This was originally written on June 21, 2017.

People Watching

Before service started, there was a welcome, and then our pastor called up a man because he had a “word” to give some people in the congregation. We have learned that this is somewhat normal but still very abnormal to our family. We were not used to that. So, we sat and watched this man pace back and forth in front of the congregation.

I am a people watcher/reader, and the thing that caught my eye was that he never opened his eyes when he was pacing or talking. He kept touching the insides of his hands. You could tell that he was uncomfortable but obedient. He said that he had had this word from the Lord. Also, he wanted to make sure that it was from Him and not from this man’s flesh. However, he realized through his sleepless nights that this was from the Lord, and he had to be obedient.

The Word

He said he had a word for someone in the congregation, so we sat, listened, and watched him pace. He made his way down the aisle we were sitting on and stopped in front of Big Daddy. I felt like all the oxygen had been sucked out of the room, and my mind was whirling. He asked Big Daddy to stand up. I looked to the altar, where our pastor was standing, and he gave me a look, a nod, and a smile that it was okay.

This man, whom we had never seen or met, told Big Daddy to hold onto his hand. Big Daddy is not a tiny man, and his hands are ginormous, so when he stands, he is noticed. This man said that the Lord was telling him to “Hold on. Hold on tight to the rope and do not let go. To trust and hold on tight.” I felt an energy move through me, and tears flowed freely. This was strange because I don’t usually cry or get swept up in my emotions. The moment was fleeting, but the air was thick, and I knew, in my soul, we were in for a ride.

Come the beginning of 2017, so many things happened.

My daddy had quadruple bypass surgery. Then, my niece was sentenced, and my nephew was close behind her. My daughter went to military school due to her behavior. Also, we had a family issue involving another baby that was devastating. Oh, let’s not forget my oldest daughter called off her engagement. She was downsized at work. We were also fighting with insurance companies for my son’s needs surgery. Add that to my Lady getting sick. Then, the straw that broke the camel’s back happened. We were reminded to “hold on” throughout the first six mths of 2017.

Even More

Big Daddy and I tried hard to win a case during the incident involving a family member. It was simply out of our hands. We knew what we could do to help the situation and were willing, but it was not our call. As I spoke to a friend, she said I needed to “hold onto hope.” She also noted that the Hebrew meaning of “hope” is “rope,” so hold onto the rope. I caught my breath, texted her back, and asked her who had told her that. She said it was a word from the Lord to me. I asked her if she knew the man who had said the same thing in December, and she did not know him. That is twice the Lord has said to “hold on.” I felt like we had held on pretty well.

My Sister

Then the call came. My sister called me on Tuesday, June 6, 2017. Now, she rarely calls me on a Tuesday. We’ll talk on Monday ūüôā I asked her if everything was okay, and she said she woke up to an odd text. She said it was from a friend, a former neighbor, that she used to walk with around her neighborhood. That friend said that the Lord placed my name on her heart and that she was praying for me. I have never met, spoken to, or even seen a picture of this woman. She knows me from what my sister had said, and I’m sure I wasn’t the topic of every conversation, although I am awesome like that. I told my sister I did not like that, and that meant that something was fixing to happen. My sister told me to take it as a blessing, but I was unsettled.

Daddy

After he got sick, H and I spent almost two weeks in the hospital. I missed my family, was tired, and was over it. The doctors had told me 1005 things, and none of it was good. Thankfully, one day, my sister (H’s Mamaw) came up to give me some respite on MRI day.

She came in and handed me my flatter than a flat pillow, my granny’s quilt, and a gift from my daddy. Again, I am told to “hold on” in some form or fashion. I carry that with me to this day. It reminds me that my heavenly Father and my Earthly father love me and know it will all be okay!

 

 

Medical Issues, Opsoclonus Myoclonus Syndrome

Spotting the Zebra

Spotting the ZebraSpotting the Zebra

Here we are, Spotting the Zebra. Dr. Ehert has been so good to us. So thorough, and she even fielded questions from my sister, H’s grandma. She wanted us to be discharged to Frazier Rehab, across the street, for an indefinite time.

I want to go home, even for just a night.

I realized I needed to see my kids, my kids needed to see me and H. I needed my shower and my bed, even if it was just for a few hours. We had declined the offer to go to Frazier, and I set up speech (he had lost some of his speech), Occupational therapy, and physical therapy. If the doctors were not satisfied with his progress, we would go.

The Hospitalist said that there were really no more tests to run and that we could go home because A) they had no clue what he had, B) there were no more tests to run C) I begged. So, without a diagnosis., we hustled and got out of that hospital. We drove for about 3 hrs and then my phone rang. It was Dr. Ehert. She said that we left without seeing her. I explained that we saw Dr. Bhalla (her fellow) and that she cleared us to go.

Then there was a pause.

She asked me how far out of Louisville we were. I told her I was about 3 hrs from there and a 1/2 hour from home. She explained so gingerly that one of his tests (1 of about 200) came back positive and that we needed to turn around and get back up there to start steroids. I asked her how urgent it was and if I could go home for a bit, and she was hesitant.

She said the sooner they start it, the sooner he could get better. The treatment was to last for five days. She never mentioned a diagnosis, but her voice had a definite concern. I told her that I was going home. There were things I needed to do like getting a shower, seeing my kids, and sleeping in my bed. Ultimately, I would be happy to leave in the morning as long as his life was not in danger. That is what I was going to do. I had to mentally prepare myself to be up there for that long again.

We got home, and it was sweet.

He was so excited to see everyone, and everyone was excited to see him. I jumped in the shower and blew off all that nasty hospital funk. It was glorious. I slept so well that night. About 9 am the following day; we headed out again. I felt more prepared. I knew what to pack and was mentally ready. We got up there, and we could bypass the ER and go to quick admitting. They were expecting us. We met up with the beloved IV team again, and we got an IV started for him and Superman ūüôā They told me they would give him high doses of steroids for the next five days.

Steroids are supposed to make you eat and make you a bit irritable. I could not get this child to eat anything. He wouldn’t even eat a cookie. He did sleep some, but it was restless. After three doses of steroids, he could stand on his own and maybe take a step or two. His tremors lessened. His voice was not as shaky, but his eyes were everywhere!

Phone Call from the Beach

Early the following day, at 1 is, I finally shut my eyes for a moment, and it comes to the nurse. She said that I had a phone call. I think, “who on earth is calling me, on a nurse’s cellphone, at 1 am.” It was Dr. Puri. He is a pediatric neurologist who was calling me from Myrtle Beach. I asked him why he was calling me while he was on vacation, and Dr. Puri said he wanted to ease my nerves.

He is a phenomenal doctor. I have been told that he is well-loved and well-educated and has seen some bizarre things. There was an assurance that there was no worry of childhood MS, which is what I thought he might have because of his symptoms. He said because no lesions were found anywhere. It is doubtful that he has this, he said he believed it to be another autoimmune disease, and he assured me that they, as a team, would figure it out.

New Neuro

In comes Dr. Sweeney. I came close to dismissing him because he looked at my son’s age. I thought that he was a youth volunteer. He said that the team had assembled and discussed our case. They wanted to run more tests but felt pretty confident in the diagnosis. He kicked every other doctor off the case because this was strictly a neuro case, and there was no need for a bunch of Drs telling me their opinions and interrupting our day when they didn’t need to.

We did another MRI of his brain and spine (with contrast) and another CT scan of his chest, abdomen, and pelvic region. They knew what they were looking for now. We did a follow-up urine test, and they “attempted” to draw blood while he was asleep…6 sticks later, they still could not get enough blood. At that point, I put my foot down and told them that if ANY IVs or blood draws were necessary, ONLY the IV team would do this for me.

All Tests Were Normal

Once all these tests came back (normal, I might add), Dr. Sweeney stopped the steroids (he had had eight doses of them), and he started him on IVIg (immunotherapy) for about 6 1/2 hrs. He said when that was finished, we could go home. There was nothing else for them to do or any more tests, at the moment, that they could do. I could do the same thing here as they could there.

They did want me to take him to Frazier for a couple of weeks. I explained that we already had therapy and equipment in place, and they were satisfied with that for now. We would readdress it when we came back for our follow-up appointment. All tests were clear except for high pressure with the spinal tap, and that test was positive for Oligoclonal Banding.

Spotting the Zebra

Dr. Sweeney captured the rogue zebra in a not kind of way. He thought that he had misdiagnosed him with OMS. Sadly, he felt he had Spinocerebellar Ataxia. SCA is confirmed through genetic testing. Whereas OMS is a clinical diagnosis. It turns out that he does not have SCA, and he does not have ATLD1. We are back to the OMS diagnosis.  

 

Medical Issues, Opsoclonus Myoclonus Syndrome

Is it a Rogue Zebra or Something Else

Is it a Rogue Zebra or Something Else

Is it a Rogue Zebra or Something Else

We got to the Norton’s Children’s Hospital ER, and I realized that the calmness I once felt was now moving into the “they are paying a lot of attention to us” moment and “oh crap.” Nurses were moving quickly. We were seeing attendings and not interns or residents. My mama’s gut was screaming, but my outer shell was trying to convince my inner shell that things were okay, and they were overly attentive.

 

All Eyes Were On H

 

Without much of a blink, I had the ER attending, the neuro attending, the peds attending, and there was one other one, but I could not think of who that person was. They got him in a gown. I blinked, and the next thing I knew, they were putting in an IV, drawing vials of blood, and testing his urine. It all happened so fast.

 

Explaining the Last 2 ER Visits

 

When I talked to the attendings, I explained that we had just been to Vandy and what they had said. I told them I might be overly cautious, but it seemed H was getting worse. All I wanted was two doctors, two different hospitals, and two different states telling me the same thing. Once that was done, I would be good to go. The last thing I wanted to do was to stay.

 

Dancing Eyes

 

I blinked again, and when I looked up,¬†H’s eyes were dancing¬†all over his head. It reminded me of one of those reptiles with a third eyelid. Quickly, I got up and hung my head out the door for the attending. I stood, where my face was not visible to H. Before that moment, I was cool as a cucumber the whole time. Sadly, when that third eyelid thing had to be fixed, that scared me. That’s when things started moving a bit faster.

 

Not a Normal Mama

 

I am not the type of mama who always is at the hospital or doctor’s office for every snot rocket, complaint, bent finger or toe, or even blood gushing. I do not subscribe to that in my life. If mama is quiet and the kid is quiet, things can get done and assessed. I told these people that. I apologized for even taking their time because I was sure that everyone would agree.

 

They disagreed.

 

Not even in the slightest.

 

A 6-Day Stay

 

My previously healthy 3-year-old was poked, prodded, sedated, and infused. I was alone (Big Daddy was home with the other kiddos), with a 3-year-old, surrounded by doctors, residents, interns, students, and nurses. There was not one person who would give me a straight answer. I finally cornered one of the doctors, and I told her I was a nice person. I tolerate it a lot. I am also a forthright person, and I do not beat around the bush. The one thing that can get a bee up my drawers is when people are dishonest or dancing around things for me.

 

I understand that they do not have all the test results. I know that they do not know, for sure, what this is. They know what tests they are running, why the people are running them, and what they are ruling out. That is the stuff I want to know. I will not lose my cool. There will not be a time when I will panic, faint, cry, or scream. My job is to be a student of whatever is going on.

 

Student Doctor

 

One sweet little student doctor, who looked like my son’s age, stepped out of his box. He got down on H’s level. This sweet man played with him, connected with him, and was genuinely concerned about him and me. There were days when he would stop by and ask random questions because he was going home and researching. Out of his graciousness, he made me a list of all the tests. Which tests were pending and which had results (and he gave me the results).

 

Also, he took the extra time to write down what disease each test was for, what was ruled out, and what they were looking for within the tests. That list became gold to me. Every time a nurse came in, she would check to see if a specific result had come in. This is what I needed. The list calmed my soul, and I felt empowered and in the loop.

 

The Hospitalist

 

There was another doctor; she was a pediatrician and was the hospitalist for the week. She slammed me between the eyes. This doctor said that he would not get better and that it was an autoimmune disease. They could not pin it down, but the fact that every single day, he was getting worse and much weaker. She said that I needed to see the gravity of the situation. I need to make adjustments at home. I needed to set up therapy. They wanted him in Frazier Rehab for an indefinite amount of time. I was going to be the one who had to feed him. We had to get him fitted for a wheelchair. What was happening was our new life, and I needed to prepare myself.

 

Time for a Meltdown

 

I believe that conversation was the first time I truly had a meltdown. Amazingly, I did not do so in front of all the doctors. I waited until they left. Before my moment, I got my son watching a movie. Then, I stepped into the bathroom and called my sister, H’s grandma. That is when I lost my composure. I could hear H in the other room sweetly saying, “mama, don’t cry. Come out of the bathroom and don’t cry.” I came out. Then I washed my face. Next, we watched Cars for the thousandth time.

 

Choosing Joy

 

I purposed not to let this dictate his life or mine. Adjustments? Fine. I can do that. Therapy? Fine. I can do that. When the doctors came to do rounds again, there were about 12. All of them were timid around me. They would not look me in the eye. I guess they thought I was going to break down. There was a moment, and now my moment was over. I told them that even in times like this, I choose joy. According to God, this would not defeat us. OMS was just a part of our story.

 

I explained that these doctors would see something similar in their future. When they do, they will remember H. Hopefully, they will know what tests to run and what to look for within his body. Also, to realize that God will be glorified. The tone in the room changed. They began to tell me they were praying for us and encouraging me, saying that God can still do miracles.

 

Next, we meet our Neurologist team. 

 

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Medical Issues, Opsoclonus Myoclonus Syndrome

I Am Not Crying

I Am Not Crying

I Am Not Crying

I swear, I Am Not Crying. Yet maybe I am. Perhaps I sat in the bathroom (after disinfecting it) and teared up. I feel like The Rock in the Jumanji movie where they get to the jungle, and he repeats to himself, “don’t cry, don’t cry.” Yet tears began to flow.

This is not normal.

I will never get used to this sight. Ever. These “chemo” chairs affect my soul on a deep level. Seeing all these babies, children, and young adults, does not get normal. It is not just “another day, another treatment.” It’s not.

Today, someone finished their treatment. The nurses sang and clapped. You could see their smiling eyes even though everyone had a mask on their face. That warms my heart, but still, there is a disease that has ravished these children. Not okay.

Beginning

We started in a room and then got kicked to a chemo chair. These chairs suck. Drapes separate people, yet the floor is packed. Nurses move, gurneys come in, IVs get clogged, IVs beep and meds flow freely. Oncology kids are getting tested for Corona. The screams I hear are piercing. It is protocol in these uncertain times. I get that and respect that. Honestly, I’m glad they are taking precautions but still. This is hard.

Lost Count

I have lost count of how many pokes, flushes, bp checks, temp checks, and weight checks he has had. How many drugs have flowed through his little body, yet it still tremors? Countless questions about why he isn’t in remission and will it ever happen. Then multiple answers of “Brandi, accept this. This is as good as he will get.” The uncertainty of what is to come as he gets older. I am overwhelmed with grief.

Don’t Get Me Wrong

He has come SO far. I mean, he is no longer in a wheelchair. He can walk from point A to point B. I don’t ever want to sound ungrateful. Yet, if you have never had a child with a condition and monthly treatments, you don’t truly understand what we go through. I can still be humbled and grateful while still mourning his health. Does that make sense? It does to me.

Two people on this Earth know what we have been through, and that’s it. Those people are H and me. No one else has walked this path. My husband and children have seen a lot. Other people have seen what I have allowed them to see. I don’t break often, but I know it is pitiful when I do. Those who love me want to remind, comfort, and point me to the cross. I truly appreciate that.

Yet

There is a deep-seated pain that is always present. The constant feeling of “what next or when do we have to use the big meds again?” How I watch him move and analyze every single tremor. Fear that sets in when someone comes into my house that has been sick. I live in fear. Yes, I know fear is a liar. I know that God is bigger. Also, I know that He has a plan and a purpose. I know H is healed due to the stripes on Jesus’ back.

I know.

Sadly, I know that I’m human. Fallible. Subject to listening to the lies of satan. I know the blessings‚ÄĒthe strides he has made. I am aware. Honestly, I’m just tired. I am so tired. This journey I want to end. Not necessarily for me but for him. I don’t want him to tremble, rage, have OCD, treatments, exhaustion, fear, or uncertainty.

I Am Not Crying.