Medical Issues, Opsoclonus Myoclonus Syndrome

Time to Get Over Ourselves

Time to Get Over Ourselves

2 Day Hospital Stay

In this post, Time to Get Over Ourselves, H, A, and I have been at Vanderbilt Children’s Hospital for two days for his infusion. This is the hospital that misdiagnosed him the second time. Now, after 2 yrs, we have found a specialist who has seen his condition.

Now, she has not seen a lot of cases, but at least some. She is willing to learn as we go, and she talks WITH me, not AT me. The last time I checked, I was H’s expert. She respects that, and I appreciate that.

Infusion Time

This is our first infusion at this hospital. It is pretty different from the last three hospitals we have had infusions in. All three other places (Norton’s, UK Children’s, and UPMC) have done one full day of IVIG. We have always had a private room and meal services. That was nice.

Here, however, is a WAY different ball of wax. We are in the cancer infusion section. It is one large room with about 12 of those hospital reclining chairs. Each person comes in and grabs a seat. There are private rooms, but that is for different cases.

As I Look Around

As I look around, I see these children that have ranged from bitty babies to 18 yrs old—everyone here for chemo. I have seen entirely bald children, some with sporadic hair pieces, some with just thinning hair or bald spots, and some that have not lost their hair.

Parents, they are tired. They are overwhelmed. These parents have bags full of everything their child/ren could need/want during their infusion. I have seen a range of emotions, from irritation to anger to frustration to intense sadness. My heart aches as I wonder which of those categories I have fallen into.

Sweet Mama Precious Baby

This one sweet mama, her daughter, looked to be about 3. When we got here, the little girl was wallering in a chair that was too big for her. Then, mama got in the chair, and this baby melted into the warmth of her arms.

She slept until she didn’t. Once the meds hit, this little girl cried, screamed, thrashed, and more. The mama tried to get the daddy to hold her, and this little peach did not have it. She was angry at her father and did not want him to touch her. This blessed little person wanted her mama, but she didn’t.

Calm in the Storm

Finally, a nurse took them to a private room, where she continued to scream for 45 minutes. My heart ached for them all. Eventually, she fell asleep, and the mom quietly retreated out of the room for some untainted air.

I approached her with kind eyes and a warm tone when she came back in. She apologized if her daughter disrupted us. That is the last thing I wanted. I gave her tips on what we do when H rages. The things that worked for us during his hospital stays. We laughed together quietly. She was able to express herself freely because I got it. I understood. We are all in this together. Honestly, this is not where anyone in this room wants to be.

Macarena

At one point, the nurses started clapping and singing the Macarena song. It was something fun they made up to sing to a patient who had completed their chemo treatments. All patients sang, clapped, and smiled at this victory. A and I fought hard not to have a complete come apart. What a beautiful moment.

Emotions of the People

I’ve seen smiles, perseverance, tears, victories, triumphs, and frustration. The nurses work hard to do their job, and they do it well. My heart aches that we are even here. Yet I know that cancer is not what is attacking H’s little body, and for that, I am thankful.

Completely overwhelmed.

Stop complaining about things that are SO minor. Honestly, the mundane crap and trials of life are just that; mundane crap. It will not matter in a week or a month. Seriously, we all need to get over ourselves. These things we get irritated over are nothing compared to what I am looking at now.

Wanna see strength?

Sit in the cancer ward of the hospital. I just saw a 6’2″ man walking with his 18 mth old balding son. This tiny fry marched confidently to the toy cabinet. Daddy opened it and crouched down as he picked something to play with while he had his treatment. I could not hold back my tears.

Time to Get Over Ourselves

Love more. Forgive more. Hold your family close; even if you don’t like them, you must LOVE them. Stop being petty and snippy. It may take a while to absorb all I’ve seen fully. There is a lot that I need to say to people who have hurt me or whom I have hurt.

Stop talking about living a simpler life, loving more, not holding grudges, etc. Do it. People can say or “post” what they do all day and twice on Sunday. That does not mean they live the life they say they live.

Stop talking. Start doing.

This.

This place is where the rubber meets the road for me. Just as I think all people need to visit a developing country to make them appreciate life more and what they have. This place is somewhere everyone needs to see to humble themselves and be grateful.

Ideas

Donate your time, money, and gently used or new toys to a children’s cancer ward. They need it, and it brings them joy for the time they are here. Thank a nurse, dr, EMT, firefighter, police officer, or military person/family.

My heart is changed.

 

Medical Issues, Opsoclonus Myoclonus Syndrome

The Key to a Successful IV

The Key to a Successful IV

The Key to a Successful IV

Here is The Key to a Successful IV. Friends, neighbors, countrymen, lend me your eyes. We have figured it out! A couple of months ago, H got a slight cold. In a healthy child, that would look like a low-grade fever, snot, cough, or just feeling yucky altogether. In an OMS child, however, it is a different ballgame.

Flare-Up 101

A cold spells trouble when you have a child with OMS, which you likely do not because it is 1 in 5 million:

  1. I noticed his eye turning in slightly.
  2. I saw a slight cough.
  3. I noticed he couldn’t hold a pencil, fork, or work legos.
  4. He would be standing up, with nothing touching him, and he would suddenly fall over.

This can last for the duration of the fever, or it can last for an extended period. Not every cold (God willing) will lead to this, but it likely will. So, tremors began, and fear set up camp in my spirit.

ER Visit

We were not due for IVIG when he got this little cold. Sadly, we get it in the chemo ward of the hospital, so if he has any signs of anything, he can’t come for fear of getting another child sick.

We set off to the ER. His dr was aware, though she made no contact with us during his illness, ER visit, or stay. That will be addressed at his next appointment because that was not okay. Also, I called the ER and told them I was on my way and what was going on with him.

Upon Arrival

We didn’t even get triaged. They quickly went through some basic things and got us into a room almost immediately. The nurses couldn’t even look at his chart because the on-call neuro looked it over. We were very pleased with our ER visit and the diligence and kindness each person showed us.

Decision of Admission

The neuro team decided to admit him for IVIG. The decision didn’t surprise me, but I dreaded the IV part. H has some pretty severe PTSD because of all of this. There are no amount of distractions that can prevent him from screaming his head off. Though, they have tried and tried over the last 2.5 years. It is almost always a nightmare.

The nurse came in, and I immediately apologized for what was happening. She understood and told me not to worry. I told her he was scared of white jackets, stethoscopes, gloves, cleaning stuff, and a rubber band. She smiled and said no problem.

Then Magic Happened

She took off her coat and stethoscope and informed her helpers to do so. As they entered the room, she asked me to watch her and her helpers thoroughly clean and sanitize their hands.

Then, she put in his IV with NO TEARS and NO SCREAMING, like zero. He even watched. It was the most bizarre thing I have ever seen. He thrashes and screams as soon as he is touched. Yet, this time, nothing.

Fast Forward to Not One but Two IVIG Treatments

In the last treatment and this one, I have asked that they not wear gloves. I wanted to see if it was just a fluke. Guess what? It isn’t a fluke! He has not made a sound when he gets his IV in. It is the most fantastic phenomenon ever. Those parents with medically fragile kids will understand how exciting this is for me!

We have our IVIG routine down pat, though it is not our favorite thing to do in the world. I wish he were well, but he is alive, and I will take that any day of the week and twice on Sunday!