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

Annual Retesting for Opsoclonus Myoclonus Syndrome

Annual Retesting for Opsoclonus Myoclonus Syndrome

I dread hospital days. Usually, I start getting anxious about a week prior, and then it hits hard the day before. This time, I got a head start on packing, and I would pack light. Last time, I packed too many snacks and clothes. The first time (almost 4 yrs ago), I packed little to nothing for a two-week stay. I have one bag for both of our clothes, a book, and my slippers. Then, I packed my purse and had my little bag of bathroom things, essential oils, and electronics. One bag. One purse.

I’m ready.

Once I’m Ready

Then, I am ready. I have a coke in the fridge, water, and we are rolling. This time, however, was different. First, I was supposed to check in on Memorial Day. Doc said that we should put it off till Tuesday. Okay, fine. Adjustment.

Monday night, I went to do the pre-visit on Telehealth, and it had that I was SUPPOSED to come on Memorial Day. I messaged. No response. I called. No response. I messaged hours later. No response. Are you sensing a pattern?

My Whole Mojo was Thrown Off

Tuesday comes, and I start calling. Guess what? No response. I called admissions, and they said they had him down for coming Monday. There were no orders for him to be admitted on a Tuesday and not come (a long drive for me).

I messaged the office four times. I called three times. Then, I called admissions again. Finally, after my whole mojo was thrown off, we left at about 3 pm. It rained the entire way down, so that was an added fun element in the non-existent sun.

Getting in Our Room

We got settled, and a neuro doctor came in. She was letting me know what was going to be done. Then, we talked about his new or increasing symptoms of rage, OCD (or tics), vitiligo, and other things. I informed her that she needed to look at his last visit and whomever the two neuros were that took his cath out, they were not to get near my son. Her eyes widened.

Of course, this is a neuro I had never met, and she wasn’t aware of the plasmapheresis trauma. Tough. Just tough. I will say that our IV team (the team consisted of 1 person) was unbelievably phenomenal.

Blood Tests and Co-vid Test

He had a lot of blood drawn for several different tests. Also, he had a co-vid test which was HORRIBLE. He grabbed the stick, shoved it up to his nose more, and SCREAMED. Then, he broke it.

Good times.

Luckily, he slept well and was overall good.

Day 2 begins the round of testing.

Day 2

Today, geez. It started with someone scaring the crap out of me at 5 am. I slept on and off between 1 and 5. Well, we are up now. Neuro said that H tested positive for Co-Vid. There is some added fun.

Where on Earth?

I have no clue how this even happened. H has not been symptomatic at all. Honestly, he goes nowhere, so the people (my kids and husband) coming in and out of the house must have brought it in.

I asked for a day two retest, and they did. Guess what? It was positive too. Now, we are on another floor, in complete isolation. We are still getting testing done, but he will be moved to the last on the list.

Lots to Do

He is supposed to have an MRI and an LP (Lumbar Puncture) today, under sedation. If you have sedation, you can’t eat or drink. He is hungry and thirsty, which will make for an unhappy boy. His blood tests came back normal, except his iron is low. That is fixable. All the other doctors will be coming in today. Some stranger is peeking in his window and waving. Quite creepy if you ask me.

Positives and Negatives

Positive: People don’t bother us.

Negative: Co-vid. Grumpy child. Isolation.

Also, a HUGE negative is that we are now being discharged because he can’t be under sedation for 20 days. Bloodwork was done, and we got urine on him. The Rheumatologist and behavioral specialist will see him, BUT the most important thing is the MRI and the LP.

So, we have to come back in 20 days. The fun never ends.

So far, everyone else in my family has tested negative.

Day 3

As you might remember from yesterday’s post, lots of stuff happened. So many delays, a co-vid scare, and a tick on him are the highlights. Mix in being hungry, exhausted, and frustrated, and there you have our first (and only) 2-day stay at the hospital. Let’s talk OMS, shall we?

Opsoclonus Myoclonus Syndrome (OMS) is difficult to diagnose. It is easier when a child has a paraneoplastic type or neuroblastoma. Yet, being idiopathic is just a shot in the dark. Sadly, Vanderbilt has not done as well, in our opinion.

Is it God Speaking?

The 1-day screw-up or the 2-day delay was that God said, “stay home?” Nah, God hasn’t spoken to me in a while (in my opinion, not His). I press on, determined to get an answer with one of my many phone calls or messages.

We get there, and most go smoothly. We get to our room, and things start falling into place. Nurses come in and do their thing. We get the IV going, tests begin running, and questions are asked. You know, all the things. The co-vid test was a NIGHTMARE, but we got it done.

Is He Speaking Louder?

At 5 am, the neuro walked in to inform me that H tested positive for co-vid. I told her it had to be wrong because we had been nowhere. He has no symptoms. She said it was positive and that we were being transferred to the co-vid unit.

Excellent.

They decided to retest him at 530 am. Fun, I know. Regardless of the outcome of that test, the aliens came in and whisked him down to the “red-headed stepchild” ward. I kid you not; that’s what people call it.

My mom called and said, “Brandi, can’t you just go home?” I told her no because we needed these tests. That was my third warning and our second positive test.

In the Meantime

My family, back at home, is getting tested right and left. It’s a lot of people to get tested. Yet, once it was all said and done, everyone tested negative. It wasn’t surprising, and I still questioned whether or not the test was accurate.

Yet, we had an attentive resident who seemed to “see” me. We had a wonderful nurse who put H at ease in every aspect. I ignored all the warnings and second-guessed myself, and we pressed on again.

Final Say

He didn’t just give me signs, feelings, phone calls, and such. This time, He just said, “leave.” The powers that be came in and said there was nothing they could do for 20 days. We should go on home and come back.

That was loud and clear.

On Our Way Home

As I turned down the road home, rain began pouring down. My boy woke from a nap, it began to storm, and the sun’s rays shone down. I prayed for the Lord to give me a sign that all would be okay. I looked in my mirror and saw a HUGE double rainbow. It was glorious.

I had H turn around, telling him the story of Noah and the ark. H informed me that he knew all about the ark and the flood. We talked of salvation, the Holy Spirit, God’s promises, and such.

We turned on some praise and worship. H was raising his hands and singing so loudly to each song. It warms my heart to know that he has been through so much, and he still praises Jesus. I felt peace and warmth blow through my body.

By the way, H and I tested on the 3rd and are CO-VID FREE!

Maybe, God is moving.