A Terrifying Journey

Ok, so I’ve been living at Johns Hopkins hospital for a week with my son, Chance. I only expected us to be here overnight. Ha! I should have known better.

Johns Hopkins
Before surgery

Chance obviously has some challenges in life. He has cerebral palsy and epilepsy as well as intellectual disabilities. I just tell everyone that he’s like a 9 month old baby, physically and mentally. Recently he was  also diagnosed with severe sleep apnea and we thought it might help to remove his tonsils. So, we came in on a Friday and the surgery went well. He was scheduled to stay overnight in the pediatric intensive care unit (PICU).

PICU hospital stay
View from our window in PICU

Things went well the first night, but on Saturday morning he had a terrible seizure and Coded! For the uninitiated, that means his heart stopped and CPR was performed. I never thought I’d have to see CPR performed on one of my children.

Chance
CPR in action

Along with CPR comes a host of new fun things my boy has to endure, like being on a ventilator and having a needle jammed into his leg bone for quick IV access. That needle was quickly taken out after a central line was placed in his neck.

Johns Hopkins
Central line delivering meds

The central line was crucial for delivering the many meds to keep him unconscious and treat him with antibiotics, in case of infection.

Johns Hopkins hospital
Lots of meds for a little body

He was also given a urinary catheter (poor guy) and hooked up continuously to an EKG machine to check for “sub-clinical” seizures. Parents can learn lots of fancy medical terms they don’t want to know when their child is critically ill.

Johns Hopkins hospital
My child the mummy

As of this writing, it is Saturday again, one week since he coded. He was finally weened from the vent yesterday and is now on a bi-pap machine to support his breathing. I was so happy to have that tube removed, but now the real work starts for me. He’s awake and very unhappy with all of this, scooting down in the bed, throwing his arms around, trying to shake the bi-pap mask off. Also, all the antibiotics have given him terrible diarrhea, so every time he coughs there’s a mess to clean up. Fun times. 

Sick child
A dragon from Daddy

I’ll update some more later, when he’s off breathing assistance. Although that will probably take a few days as they step him down from bi-pap to c-pap to nasal cannula. See, those “fancy” medical terms again!!!

Peace. ✌

The Narcissistic Sibling

I realized recently that my older sister has a narcissistic type of personality disorder. I’m not a psychologist or psychiatrist, but I’m reasonably intelligent and have a medical background, a good friend with a narcissistic mother and have read about it a lot.

The first really odd thing I remember happening is when she left me high and dry as my ride to our cousin’s wedding in Pennsylvania. 

Sister love
Not my cousin’s wedding, since I’m actually there, far left.

Right before the wedding, I happened to be in Ocean City, MD with a couple of friends, and she was at college in Salisbury, MD.  We arranged beforehand to meet at her dorm room so we could drive up together. This is in 1986, no cell phones, so this is common practice. My friends dropped me off at the campus and I walked to her dorm room and she was?…nowhere to be found. Gone. Absconded. I’m very conscientious about time, so am never late, but she left me there and didn’t care what happened. For once in her life, she left early.

I had no phone number for my aunt or cousin and my mother was already there. I didn’t know where to go. And I didn’t have the number for my friends’ condo in OC, but even if I had, they would have been at the beach, not waiting for me to call for yet another ride. 

This was traumatic, I’d been literally abandoned. I didn’t have much money, I was a teenager. I ended up going out to the main road and hitchhiking back to Ocean City, where I eventually found my friends and wasn’t murdered by the guy who picked me up, thank God!

The worst part was that, #1 I missed the wedding. #2 She blamed Me. I don’t know what she said, probably that I didn’t show up at the dorm? Since she was there and I wasn’t, they took her side. I was the black sheep. She’s a really good liar. My mother and other sisters wouldn’t believe me. I missed a wedding which I was really looking forward to. My cousin was, I’m sure, very hurt. 

And since, everyone’s looked at me a little funny, especially my aunt and cousin. They still do, 30+ years later.

Protest
#NoH8Campaign

This is how narcissistics manipulate others so they can ruin lives. Here’s something from a blog I found really interesting and helpful, because the betrayal from the other “normal” relatives is very devastating. The second one really reminds me of my mother.

Why Do Family Members Align With the Narcissist?

-The narcissist appears to have power. They call the shots, command attention, control decision making and extract compliance from others. They are defective ‘alpha dogs’. Those who go along with this power grab hope to share in the power – or at least not be targeted for abuse.

-Fear of facing ‘the awful truth’ about family or oneself, and having to do something about it, leads to minimizing or denying the existence of the problem. Faced with the potential of being attacked and rejected, and the general upheaval that can stem from taking responsibility for admitting the truth, many narcissist supporters will choose to ‘look the other way’, at tremendous cost to themselves and the family.

I pledge these 5 things

No Ban No Wall
Sanctuary

From OxFamAmerica.org:

  • I will fight to address runaway inequality that has left so many people behind, especially women and people of color.
  • I will fight to defend US support for refugees who have nowhere to turn as they flee crises and give voice to #refugeeswelcome.
  • I will fight to raise the federal minimum wage and close the income gap.
  • I will fight to protect the most vulnerable people around the world from climate change that has already destroyed their communities and livelihoods – because climate change is real.
  • I will stand up for what is right, what is fair, and what is just.
  • #Resist      #NoBanNoWall 

I thought I’d seen it all until…explosive diarrhea

My son Chance has cerebral palsy, epilepsy, intellectual handicaps and chronic, severe constipation. I tried to tell doctors when he was a baby, that he couldn’t poop for days and when he did, he would scream and the poop would shoot across the room and his rectum would turn inside out and bleed. As per usual, nobody listened.

So now his intestines are ruined, no motility and permanently misshapen. He’s been hospitalized three times because of it. They usually put in a naso-gastric (nose to stomach) tube and start pumping in “go-lightly”, which is the stuff people drink before certain procedures to clean out the intestines. They also give multiple enemas. The first time he was hospitalized for this they said it takes a day or two, but it took five days and 5 times the amount of go-lightly to finally start working. And when it did start working, oh boy! The smell! 👃 The mess! We called it a “code brown” and it would take me and at least 2 nurses to clean him up.

Unhappy boy
Not too happy ☺

So I did think I’d seen it all until the other day. See, since the last hospitalization, I’ve been following the doctors orders and diligently giving him miralax, a medicine to soften poop, and lots of it. He still wasn’t doing anything, so I started with the enemas. Six enemas over several days and he finally had a little poopy stain on his diaper, yay! 

Hospitalized
Chance in hospital with his little sister

So I’m changing his diaper and cleaning him off and he coughed, which released a huge brown stream of poop, which shot across the room until it hit the bathroom door. I actually screamed in surprise and horror. So he’s a mess, some of it splashed on his bed and it’s dripping down the bathroom door toward the carpet! I didn’t know what to clean first.

Special needs
Chance

Looking back now, I can laugh…kinda! 

Christmas Hacks

Just today, Christmas eve, I discovered a couple of ways to beautify and save money too!

Christmas savings hacks beautify
Gift bag tag

Here’s the saving money hack. Above is a gift bag. I don’t know about you, but my family trades gift bags back and forth. They’re too expensive and too pretty to just throw away. Soooo, long story short, I put my sticky tag on the tissue paper so the bag isn’t ruined. Replacing one piece of tissue paper is so much cheaper and easier than replacing a gift bag.

Now for the beauty hack:

I got these cheapy ornaments at the grocery store and added ribbon, bells and charms to them. They look and sound so much prettier (and more expensive).

Here’s a close up of one.

Ornament with ribbon, bells and charms.
Here’s another photo:

Ribbon, bells charms ornaments.

Here’s the finished “product”.