Wednesday, March 31, 2010

Thoughts on Hospitalization & Parenting with Chronic Illness

I recently spent the night in the hospital due to a severe asthma flare up. I did 5 days of prednisone at home (30mg), 6 days of 24/7 nebulizer treatments at home, slept upright for 10 days and was unable to break the asthma. I could literally feel the inflammation building back up in my lungs after nebulizer treatments--my lungs were insanely inflamed.

I did my best to stay out of the ER and hospital. I called my pulmonologist, she called me. We were doing everything we could.

But I ended up in the hospital anyway because I realized I could not breathe well enough to drive nor walk well enough to get navigate the medical building for an x-ray or even walk from x-ray to the doctor's office. I needed the ER's centralized care

The thing is, this is probably going to financially ruin us. Because there was some heart weirdness going on too and I got the full heart work up which is expensive.

Except we have insurance, right?

Yeah, insurance with a high high deductible. Insurance that, based on past behavior, is going to deny the claim so I'll have to fight them.

I hope health care reform brings some relief to this situation. It seems completely asinine to me that we work, we pay our premiums and we still are at risk of ending up destitute due to medical bills.

The other thing that I've been reflecting on is how illness impacts parenting. The babeola has been sick since January (although doing better within the last week or two) and now I've been sick for almost 2 weeks. Month after month of sick has take a toll on my parenting and the 'norms' of our relationship.

I was sad to see how readily the babeola cuddled with me and watched TV when she visited me in the hospital. Because that's how I've been parenting of late; letting her lay on me with the TV blaring while I try to sleep off the asthma. I was moved to tears that my daughter would find this normal--cuddling with a near comatose parent. Then when she was sick, I used TV to keep her entertained because she wasn't well enough for a lot of activity--she herself has been wheezing and had some nebulizer treatments.

Intellectually, I know this is not my fault and that I can only do what I can do. But this is also not how I want to parent nor is this how I want my daughter to experience me as a parent.

She now pretends to take the nebulizer with me which just makes me shudder in horror. This is not what I want to model as a parent; pill popping, nebulizer sucking, hospital stay parenting. That was never my goal and I feel like I'm swimming upstream to avoid this and failing.

This situation also feeds into whether or not we will or should have another child. I'm thinking no. I think I got really lucky to have the babeola, but between the expenses of caring for a child and now my medical expenses on top of that, I don't think we can justify it financially. Also, I feel like I need to be as healthy as I can be for the child I have, not compromising my health to have another. I don't know for sure what the future will bring, we will continue to pay to store our frozen embryos but I am thinking it is unlikely we will have more children. I am very sad about this as I had always aspired to have 2 kids. I also used to believe that my poor health could be overcome, but am realizing that is not going to be the case both physically and financially.

This was not my dream when I decided to become a parent and I need to come up with a paradigm that improves my parenting within the context of chronic illness.

1 comment:

Mrs.Flabby and Unfabulous said...

You know, I think all of us mommies aspire to be better than we are. Either due to circumstance ( as in your case) or even personal failings. I know that your illness takes it's toll on you and your family, how could it not? However I challenge you to look at the situation from a different perspective. You see how you are failing her because your body simply will not let you be the mom you envisioned.

I see that you are teaching her things that, perhaps she may not have learned another way. Or as soon. Sometimes we have to change how we envision ourselves as parents to accomodate the reality of our lives. The fact that you even wrote this , shows the concern and love you have for her and her childhood. You are a great mom. Your sweet baby is compassionate, warm, caring and has learned that there are times to be ruckous and jubiliant and times to be quiet and at peace. Those are good things to learn and yes she is young but kids don't have to be going nonstop excitement to be happy and well adjusted. Give yourself a break and trust that you are the mom she was meant to have. Even if all you ever do for her is love her and show her that love. It's enough.