Thursday, January 8, 2015

You just can't make this stuff up....

Yesterday our post lady brought in a registered letter that needed a signature because it was OFFICIAL. Naturally I was curious because, let's face it, I don't even get out of the house on a daily basis much less get into enough trouble to require an OFFICIAL letter.

But alas, even when I think there isn't much left with Tess that can shock me, boom, a letter from our home health agency managed to do just that.

Our HHA, who provides our in home nursing, just kicked Tess to the curb due to "lack of staffing".

Did you get that? They can't find a nurse to come out here, and apparently placing adds is just too much for them to handle, so they sent me a letter basically telling me they won't help us any more. But let's keep in mind that they are all about the kids.

*snort*.

And it's even more ridiculous considering Tess now has a palliative care team being set up because she has been deemed medically fragile enough for us to need that extra support.

Awesome.

Oh, and bonus, Tess will most likely be having yet another major surgery sometime this year to correct her spine.  This is a surgery that both Charlie and I have had major reservations about because of how big a surgery it is and how invasive it is added to the fact that she had a very scary post op pneumonia from her bilateral hip surgery and has gotten even more fragile since then.  And in all honestly, we are scared to death that by agreeing to it we are going to harm more than help her which begs the obvious question,

So why put her through it?

We have finally come to the place where we know that basing decisions about Tess's health on fear rather than facts is just not fair to her. We have discussed and discussed all of the benefits vs. risks and are finally at a place where we can see just how much she really does need this surgery. At this point, her scoliosis is literally compressing her left lung making it a lot harder for her to fight pneumonias when she does get them. And guess which lung she almost aways gets them in? Ding. Ding. Ding. You got it. The left one. The scoliosis is also making her right rib cage sort of pop out in the back making her appear hunchbacked. It also is making it very difficult for her to do things with her body (think PT and OT) because she is spending precious energy simply trying to keep her torso and head up.

So spinal surgery is probably imminent. And I am scared to death. Not going to lie about that. As I told the doctor, I feel like I cannot make a "right" decision because if she gets the surgery, and, God forbid, she dies either during surgery or from a post-op pneumonia (which she WILL get), then I effectively killed her by letting them do the surgery, but if I let fear be my guide and don't let her have the surgery because I am scared and she dies from a pneumonia that she could have potentially fought off if she had had the surgery, then I effectively killed her by not letting her have the surgery.

A damned if you do and damned if you don't scenario that is literally life threatening either way.

But God love the doctor who very bluntly told me that I was thinking about it backwards. He told me that instead of saying that there is no "right" answer, that I needed to rethink it as there is no "wrong" answer because whatever we chose for her, we would do it out of love and what we thought was the best for her and you can't be wrong when you are doing something like that out of love.

And so, with that in mind, and refusing to let fear be my guide, surgery it is because I feel in my mother's heart, we are not doing right by her to continue to let her spine curve and compromise her health more and more.

I realize I keep saying "I" but Charlie and I are a team, and we are in this together and, after many long talks, and yes, arguments because we are scared, and getting angry feels better than feeling scared, we are in agreement.

So, long, rambling story short, there is, as always, a lot going on here at Casa de Reidy.

And right this moment, this is exactly how I feel: ;)

3 comments:

  1. Love is always the answer and there is no wrong in love. You and Charlie have made and continue to make superb choices with all your girls....and may I say, with immeasurable success. You can't control life and death. Leave that to God (life and death)and keep on operating out of that endless love.

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  2. This is such a very Hard thing to decide. I am So glad you have each other. Bless you all.

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  3. Joanna - this post made my heart ache. It's so hard to decide what's best for our kids and then once we manage to make a decision, I find myself questioning the decision 3 or 4 months down the road? "is this really helping Lily?" "should I be doing this instead?" "Is this worth the financial and time investment?" "is this a colossal waste of money?" And making one decision always has a domino effect and leads to more decisions that need to be made. Argh! It's really enough to drive a Baptist preacher's wife to drink! But I love that doctor's kind words - we really are doing the best we can and at the end of the day, that's what really matters. Praying for you, my sweet friend.

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