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Tuesday, February 2, 2016

Having Chronically Sick Children

(Shutterstock image)

One thing I have learned over the years is that people don't understand that asthma is a CHRONIC disease 
(meaning it last for a LONG time)

Unlike a cold (which is an "acute" illness - meaning it lasts a short time.)

For many of us, asthma is there for life. I can't count the number of times someone has said, "My brother's next door neighbor had a friend in college who met a guy who "outgrew" their asthma, so you will too!" 

They mean well, but the fact is that asthma is a lifelong disease. I'm almost 50 and have not yet "outgrown" my asthma!

And all 3 of my kids inherited my asthma (sorry about that guys!) They have severe asthma, which means they have been hospitalized 12 times (and one son almost died twice.)

I just read this article about families dealing with kids with chronic conditions. It's called "The Connections We Make as Parents of Chronically Ill Children" 

Erin Gunn talks about 3 types of families that she sees visiting the hospital:

  1. Families who are just there for a medical test and leave
  2. Families who have had kids hospitalized, but will go back to "normal" (we sort of fit under this category)
"The second group of families knows worry. Their child has an illness that requires inpatient care or surgery. They have watched their child have painful or scary procedures. They know what it’s like to sleep in a chair at their child’s bedside. They also know their current nightmare will be over soon, and normal life will resume."

3. Families whose kids have life-threatening illnesses and will spend weeks or months in the hospital (over and over again)
Reading this article helped me remember our Family Mantra:
 
Yes, I have sped to the hospital with my emergency flashers on my car and run into the hospital carrying my lethargic, pale child. 
 
Yes, I have seen the panicked look on the face of the nurse and doctor in the emergency room. 
 
 Yes, I have watched the nurses unable to get an IV in my child's arm because their oxygen level is so low. It would take several tries (one time it took 7 tries to get an IV in son's arm.)
 
Yes, I have watched my son have a blood gas 
(they take blood from the artery instead of the vein - which is VERY painful)
 
Yes, I have watched my son hooked up to a heart monitor (so they will know if he "crashes" - or stops breathing and his heart stops beating.)
 
Yes, I have had to dig my fingernails into the palm of my hand to stop myself from crying in front of my child while they were in the hospital.
 
Yes, I have been sleep deprived, anxious, scared, and defeated during 12 hospitalizations for my kids. 
 
But none of that can compare to the families in category #3.
 
Reading this article makes me realize how lucky I am.  And how hard it is for other families with kids with medical conditions much worse than what we deal with.

Erin Gunn ends the article like this:


"Imagine if we start paying attention to everyone we meet. Imagine if we get to know their story a little, how it might impact our story. Imagine how much less alone we might feel. What if we open ourselves up to possibility, if we focus less on our busy lives and what we are doing next, and start paying attention to the moment we are in? It seems to me that we will have so much more empathy and compassion. We will learn so much about ourselves and others. We will have more support and compassion given to us when we need it."
Imagine. 

What if?
 
  
 
 
  

 

6 comments:

  1. I feel that way too. I have a friend who has crohns (so bad she has an ostomy bag), arthritis, asthma, and addisons, and has hearing aids. She is only 23 and is not expected to live long. She was at BYU but had to drop out before graduating because her health got so bad.

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    1. So sad. It's hard having chronic health problems. Sometimes we can manage them. Other times, there's not much treatment.

      I'm sorry to hear her story :(

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  2. I know I have already mentioned it, but cards for hospitalized kids http://www.cardsforhospitalizedkids.com/ is a good website. I also am good at counter cross stiching and make blankets for preemies. I also decorate bandanas for kids with cancer

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    1. That's right! I remember the cards you make.

      Nice job with the cross stitch and making blankets and bandanas. That's kind of how it goes - we know what it's like to be on the receiving end, so we give back when we can. Well done!

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  3. Although the thing with cf is that it is not good for 2 people with cf to be in close proximity of each other because one might be infected with a type of bacteria the other isn't. Most cf are online for that reason. Hospiyals even take care not to but two cf patients close to each other. I wonder how families with multiple cf kids deal with that since cf is genetic. My sister is not affected thankfully

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    1. Wow. I had no idea that CF has different types of bacteria.

      When my kids were hospitalized with RSV or pneumonia, we would always get our own room because they didn't want us to spread the germs. Apparently they have negative air pressure rooms, so the air from our room would go outside and not circulate with the other rooms (or something like that.)

      My kids also got their own gaming system the entire time they were there. They couldn't let anyone else use it because they didn't want to transfer germs.

      The hospital staff was really careful about it.

      I'm glad your sister doesn't have CF!

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