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.

Tuesday, March 16, 2010

Some Funnies and Other Toddler Developments

The other day the babeola solemnly told the hubby "Congratulations" after he responded to her question about what he was doing with "Going potty."

So the next time you pee, congratulations.

I had an exchange with her about getting ready to visit the preschool she'll be attending in the Fall. She proudly ran naked through the house and said, with a huge shit eater grin on her face, "I not copopitating, momma. I giving you hard time."

Copopitating in this case = cooperating. That was good for a chuckle.

We left her with the grandparents one afternoon so the hubby and I could go see a movie. While we were gone she told my parents she was "scared momma and daddy not come back."  I was kind of floored at her emotional intelligence and how articulate she was. The babeola? Blows my mind.

She can also read her name and just yesterday pointed to the word big and said 'that's big.' She has known all her letters and 98% of the phonic sounds for a while so I figured her for an early reader. Just not quite this early. Time will tell if she picks up any other words.

It makes me glad we got her into a multi-age classroom for preschool. I had already noticed she had a hard time relating to same-age peers and now I know she's going to need those older peers because her reading skills are going to be a few years ahead of everyone else.

On the down side, she's been sick for the last 8 weeks with one infection or another. Once quite seriously to the point she had her first breathing treatment and was bequeathed with an inhaler. Yep. Asthma is on the table. They won't give an official diagnosis until she's had several wheezing episodes, but seeing her get kicked in the teeth by serial infections tells me something is UP. I mean, she's sicker than me and I have the immune system of a gnat with full blown AIDs. It is really something to see anyone get sick, let alone my own daughter, while I stay healthy. I didn't know that was possible.

Last week she had a cold. Got over it only to start hacking again by Friday. It is really frustrating. I feel so bad for her. And of course, there are no meds for her aside from the inhaler so she just has to suffer. I just took her to the ped yesterday and all they could tell me was "she's not wheezing". Which great, but what I really want to know is how do we stop this madness? When will she be healthy for more than two days in a row? That's what I want to know!

Tuesday, March 9, 2010

Naughty and Nice

From Fall 2009

One thing that all new parents need to know is this: Children don't cooperate for pictures past a certain age.

We had a terrible time getting a good pic for the Xmas card. To the point that we used the one above with the caption... Hope your holiday is naughty and nice.

What follows is the 'nice' pic. It was the best pic we could get of her by the Xmas tree, an effort that spanned several days.

It was sheer desperation that led me to think pairing the two pics together would work as a Xmas card (many thanks to whoever coined the phrase 'naughty and nice' that saved me). I think we mailed our cards out on the 22nd of December in fact, that's how long I spent agonizing over this Xmas photo crap. But the card turned out cute and we actually got lots of compliments.

Friday, March 5, 2010

I Really Should be Writing Something Else

My health is a trainwreck.

I thought getting pregnant after 4 years of infertility treatments was IT. The defining moment demarcating the sickly past from my surely healthy future.

That is not the case.

It is too complicated to go into a lot of detail; I'm still reeling from data overload myself. Suffice it to say that PCOS is doing its darnedest to kill me.

I thought the fight was just about having a baby.

Turns out, it's a fight for my life.

Not to panic you. Death is not imminent or anything where you need to order flowers for the funeral. It is simply becoming clearer and clearer to me how insidious and deadly PCOS can be. I am SOL. I can't take the 1 medication that mostly 'fixes' PCOS and there aren't any other medications that are established alternatives.

I hope I will live forever and be healthy. I feel that, at this rate, I will be blessed to make it to 50. I probably will not have any more children which has thrust me, unprepared, into a moral and emotional crisis surrounding our 11 frozen embryos.

I can't help but look at my daughter and think my babies. My frozen embryos have ceased to be intangible products of a grand scientific experiment. They are my children and I don't want them to die.


Well, I've never been accused of being an optimist. So maybe you shouldn't take me seriously. Except, I am pretty sure it won't be safe for me to have more kids.

Dear universe, please prove me wrong. You do it every other time I am certain about anything (you bitch). Thanks.

I am having a hard time finding a good endocrinologist. The guy I was seeing was a tool who diagnosed me with Hashimoto's without really testing for it. So I don't actually know what's going on. Oh, I do know the thyroid nodules are too small to worry about a biopsy. I don't have cancer and I don't not have cancer. So long as I have nodules, I have to be screened to rule out cancer. Eh. Right now, that's good enough for me. I am a little less than enthusiastic about the need for regular screening, but eh, whatever.

I continue to be in a gray area medically where good physicians and good information are hard to come by and when you do strike pay dirt, it's convoluted and confusing.

This really sucks.