medically fragile

I was in the NICU with my daughter, Charlee for 48 days. It was not a good place for us. After Charlee failed a swallow study, it was determined that she needed a g-tube. That surgery was hard on her. After that, doctors ran a sleep study. Computers recorded indicators of airway obstruction and with that data, NICU doctors urged us to consent to a tracheostomy for Charlee. We didn’t feel Charlee could handle another surgery and we declined. We were discharged shortly after. Within twenty-four hours, we were back in the emergency department. Admitted to the PICU, they found that Charlee had a collapsed lung caused by a pleural effusion. The computer had misread her shallow breathing caused by the condition as obstructions. She didn’t need the trach after all.

I was upset that a collapsed lung had been missed in the NICU. I was upset that the recommendation of the trach, a decision so weighted for our family, was not more carefully considered. And I was upset at how it felt like the NICU washed their hands of us because we declined the trach. I didn’t have time to voice my anger because I was consumed with round the clock care Charlee required at home and preparations for neurosurgery. Charlee had a condition called hydrocephalus in which excess spinal fluid was building up and putting pressure on her brain. Like the providers in the NICU, we didn’t feel like decisions made were right for Charlee. We were running out of time and proceeded with the recommendations of the neurosurgeon. An attempt to surgically create an opening in the floor of the third ventricle failed and we were back in the emergency room ten days later for a shunt placement. I felt like everything that I had to hold in was going to explode if I didn’t get it out somehow.

While Charlee was recovering in hospital, a family support worker had dropped off a care package. It included a sketchbook and colored pencils. While Charlee slept, I drew ships rolling in whirling waves and clouds playing in the wind. It was a good distraction, but then I drew out a cartoon poking fun at the hospital culture to vent my frustration with the lack of patient space it provided. It felt really good. After that, I started to draw out Charlee’s NICU story in a graphic novel format. As the story started pouring out of me like an opening dam, I felt my anger lifting. It allowed me to work through what transpired during our time in the NICU. The more I worked on it, the more I felt I took back control over the events that happened to us. And I felt like I found some beauty in those traumatic events as the love and devotion we had for Charlee shined bright through the darkest moments of the story. I called the book Release: A NICU Fairytale ultimately because it was about Charlee’s release from the hospital, but also about the release of emotions this project gave me.

#NICU #Trauma #MedicallyComplex #MedicallyFragile #Healing #medicalmama #Disability

Hello. My name is Susan and I am immunodeficient. I have to go to in person appointments for lifesaving treatments. I am the sole caregiver for my aging mom who is a disabled veteran that just learned she needs two surgeries.

But I am also a person who has been bumped down a priority list for vaccines to end the pandemic.

When this pandemic started, we had shutdowns to protect us. Then it was mask mandates. And now it is supposed to be vaccines.

But here is what has happened.

My hopes have been dashed.

ACIP decided my life is not worth getting a vaccine.

The CDC decided my life is not worth getting a vaccine.

My state decided my life is not worth getting a vaccine.

And politicians are skipping the lines.

How?

I was a member of phase 1b. We would have been moving to getting vaccinated at the end of January or beginning of February.

But as of December 20, ACIP and the CDC prioritized healthy workers over people like me who could die from this.

And as of December 21, Alabama adopting the ACIP guidance means vulnerable patients like me are now AFTER phases 2-4. Yep. That’s right. Vulnerable patients who have the highest risk of dying are now basically going to die waiting to get vaccinated.

In my state, chemo patients cannot even get chest ports for their continuity of treatment. In my state, people like me are dying in exponentially higher rates than those who are working in stores and schools and banks.

Yet my state just bumped people like me way way down the priority list for the vaccine.

And they don’t seem to care.

No one is advocating for us. No one is listening to us. And no one seems to care about protecting us anymore.

They call it COVID fatigue.

But here’s the worst part for me.

I am the sole caregiver for a veteran who cannot have surgery until I am vaccinated. And I am going to be lucky if I live long to be vaccinated.

I have a bucket list to fill before I die to make memories with my aging mom. And everything is indefinite.

Night to Shine postponed in person. Indefinitely.

That return trip to D.C. postponed. Indefinitely.

That second trip to Disney World. Postponed. Indefinitely.

That first trip to St. Louis, to Nashville, to Mall of Americans. Postponed. Indefinitely.

The only special needs group in my area that I can afford to go to? Postponed. Indefinitely.

For the want of a vaccine that now I may never be able to get because I was bumped down the priority list.

Last week? I was feeling lighter with hopes of a vaccine around the corner feeling secure about my position in phase 1b.

This week I cannot stop crying and being angry that my government has decided that my life is not worth getting a vaccine to keep me from needing the hospital care that will not be available to me anyway.

#MedicallyFragile #COVID #covidvaccines #immunodeficiency

Hi, I’m new here. I’m the full time caregiver for my five year old daughter who has spastic quadriplegic cerebral palsy. I live with her, my husband who works from home and our oldest daughter who is 8 and now is homeschooled due to Covid-19.
We have been very strictly quarantined since March 9. When my daughter gets even a cold she needs hospital care so we’ve been home and haven’t interacted in person with people this whole time. Up until about 7 weeks ago one of us would grocery shop, but now we use curbside pickup.
We turned down the opportunity to have in home nursing care in July/august to be safe. I regretted that decision as the school year started and I attempted to homeschool both of my children ages 8 & 6.
We have the opportunity again and I still can’t give a solid yes even with an exposure assessment, the promise of n95 masks etc etc
I’m scared but I also desperately need help and we will be locked down for a very long time to come. Is it time for me to accept the help or should I keep us locked down?
I want to hear if others have let caregivers into their home, your experiences with that and just generally any opinions and reasoning on what you would do in my position. There are a lot more details to share for context but this post is already so long.

Thank you for sharing your stories with me here.
#CerebralPalsy #HypoxicIschemicEncephalopathy #Gtube #MedicallyFragile #MedicallyComplex #MedicallyComplexChild #SpecialNeedsParent #ParentsOfChildrenWithSpecialNeeds #GettingHelp #HIE

#Preemie #preemiehood #NICU #preemiebaby #preemiequotes #preemiestrong #fightlikeapreemie #nicuquotes #nicustrong #nicugrad #nicubaby #Miracle #preemietwins #niculife #HighRiskPregnancy #MedicallyFragile

What the parent of a rare and medically complex child wished you knew....
#RareDiseases #MedicallyComplex #MedicallyFragile #MedicallyComplexChild #MedicallyFragileChild
1. We will never get over the heartbreak of our child’s diagnosis. Some days are easier... but the grief never goes away.

2. We are lonely. Oh, so lonely. We hate that we don’t get invited to things anymore. Even if we can’t go to things most of the time, still invite us. We miss our friends and it’s nice to know people still want to hang out with us.

3. We are tired. Like newborn phase tired... even if our child is no longer a newborn. Please don’t complain about how your child got up twice last night... it really annoys us.

4. We appreciate help... but we will never ask for it. A simple meal, gift card, or offering to watch our other kids would mean the world to us.

5. We also experience the small things in life more fully and with more appreciation. Every moment is precious and every milestone is a miracle.

6. We feel love deeper. When your child isn’t promised tomorrow... you love more fiercely. There is so much love in every moment.

7. Our life looks hard... and it is. There is nothing easy about watching your child be poked countless times or being put to sleep and taken away to surgery. All the appointments, therapies and medications. Sometimes it’s too much and there just aren’t enough hours in a day.

8. We wish you wouldn’t say “I don’t know how you do it. I couldn’t do it if I were you.” Yes, yes you could. You love your child, so you will and can do anything for them.

9. As hard, lonely and sad as it can be.... this life is also beautiful and rewarding. We wouldn’t trade it for anything.