Hospital Survival Tips — 5 Minutes for Special Needs

Hospital Survival Tips



                               

Seven years. Over a thousand hours at hospitals and specialist appointments. Countless interventions at home. And it turns out the most important word to help my daughter’s treatment is this:

NO.

No… we’re not doing a nineteenth round of medication adjustments. It’s time for hospitalization.

No… I won’t take her home from the hospital and keep doing the things that haven’t worked in the past.

No… I won’t take her home, period. She needs more help than we can give her. It’s time for residential placement.

No… We’re not going to let her case be assigned to an intern at your teaching facility.

No… No… No…

Why haven’t I said it – really said it – until this year? At first, because I trusted specialists more than my instincts. Then because… well, I still trusted specialists more than my instincts. I feared I’d cause my little girl more pain and suffering if I didn’t cross my t’s and dot my i’s. Or maybe I was just grieving and overwhelmed. Or afraid I’d “do it wrong.”

And now I’m done with that.

Saying no seems to be the biggest yes I can say for my daughter’s treatment, for her healing, for her future. It’s not comfortable to say it. It’s a little scary, actually, to look an MD/PhD in the face and say “No, I disagree.” But I’m doing it anyway. That one little word has brought more freedom to my family in a few months than years of yes ever did.

How are you doing with “no” these days? What hard words have you had to get comfy with as a special needs parent?

-Laurie

(Photo Source)



                               

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Helping Siblings Deal with “Survivor” Guilt

A month ago my 8 year old entered a residential treatment facility. Three weeks and 6 days ago, my 9 year old began to feel horrible about it. No matter how hard things had become at home with her little sister’s behaviors, her absence brings anxiety. Partly because said 9 year old has challenging behaviors of her own due to a shared traumatic foster care history. And partly because she just doesn’t know what to do with the new peace at home.

Questions and worries circulate in her mind every day:

  • Should she grieve the absence of her sister?
  • Is it okay to feel good that she’s gone for a little while?
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Raising a child with two competing special needs

I silently nudged her in the darkness. Slipped her out of her top bunk. Wrapped her in a blanket and ushered her to the van.

Maybe if I didn’t wake her just yet, she’d forgive me, I thought.

The sun wasn’t up yet, but I’d already been up most of the night, fearing the next few hours. The bag was packed with coloring books and snacks for later. My mind anxious for the morning and what the rest of the day – the week, even – would be like.

Because the hardest thing about parenting my daughter is walking the tightrope between her two special needs: attachment disorder from early life in foster care, and profound developmental delays from being FTT as a toddler.

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Journey Into The Unknown

My new son, Ronnie, is having surgery in two weeks – significant, scary surgery. I’ve been through many significant surgeries with my daughter, Ashley, including brain surgery twice, but since Ronnie just joined my family three months ago, I have no idea how THIS surgery will go.

ronnieflower

With Ashley, I can predict exactly how she will respond to having an IV inserted. I know that while she does pretty well for X-rays, she absolutely despises being held down for any procedure. I know how different anesthesia will affect her, even knowing about how long it will take her to wake up in recovery.

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We are not alone.

As I was sitting on the floor next to the crib on the eve of Mother’s Day, watching my son struggle to breathe, I wondered how many millions of moms had been in that very spot before me. With me.

In how many homes, hospitals and bedrooms were we watching over our sick children?

I wondered how many silent prayers were being lifted up in the dark across the world at that very moment.

In a bedroom, next to the crib a mother was watching. Come, on. Breathe baby, breathe.

In a NICU a mother was praying. I’m here, just open your eyes.

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Plug In The Saw, Lucille

Ashley was cast today. Not for a play or a movie, but for those plastic orthotic things you see on the feet and ankles of many kids with physical disabilities. This was the third attempt at casting and finally, success was achieved.

orthotic

The casting process is almost exactly like getting a cast when an arm or leg is broken. There is a stockinette, something like a sock with the toes cut out, that fits over the foot and leg, a pan of water, something that looks like rolled up gauze but is actually rolled up fiberglass, some scissors, and a saw.

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Say ‘Ahhhh’

For the most part, I have been very blessed to find medical professionals who do an excellent job of providing care. I can say without a doubt that most of the doctors and other healthcare staff we see have never treated a child with my daughter, Ashley’s, unique combination of disabilities. But they are doing a wonderful job!

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I have learned some lessons along the way that have made it easier for the doctors and nurses to do their jobs, easier for me to provide the daily care that Ashley needs, and most importantly, easier on Ash. I will share some of those things in the list below, but I would love to hear from others about the lessons they have learned in parenting their children with disabilities.

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Micromanage or bust

For the last week I’ve been giving Ivy her intra venous antibiotics. One is a slow push and the other is a pump that infuses the medication over 24 hours. I clean the area and flush the line.

It’s been great at home.

I set it all up. Ivy knows the order they go in and within half an hour we are done and she is off and playing again.

Short and sweet and easy.

She feels good and looks good, despite having picked up some viral respiratory thing that was wafting around the hospital and despite us being in the thick of meltdown week.

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Special Exposure Wednesday.

 

 

 

Gran saves the day, making glove animals, while Ivy waited 22 hours, nil by mouth, for her PICC line.

Thank goodness for Grans!

Got an amazing moment to share? Why don’t you join us at Special Exposure Wednesday

Please remember your comment love at each link you visit.

Also blogging at Three Ring Circus

;

 

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Prepare for turbulance, we have re entry in 5, 4, 3, 2 and 1.

Tomorrow, after twelve long days, I’ll be bringing Ivy home.

I’m wondering if all of you with hospital time under your belts, experience re entry, like we do.

Ivy is generally overwhelmed with the hustle and bustle of home life, cranky and out of sorts.

After all, she has had the monopoly of attention of one parent 24 hours a day for a good period of time.

The other kids all want to be with me, they talk loudly and express themselves using their hands.

To a small girl, it must look like a gaggle of geese flapping their wings and honking in unison.

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