Thursday, September 1, 2011

the children's hospital

There's not much that makes me more thankful for general health than a day-long trip to the children's hospital.

As Lu and I walk down the brightly decorated corridor to our appointment, bathed in the early-morning light filtering through the bay of windows we see things:

Children seemingly much too small for such a trial are curled up in wheelchairs, legs shrunken an deformed. Smiling no less.

Others rock themselves in their orange velvet seats that line the various waiting rooms, oblivious to anything that is going on around them.

Still others are just bored. They cry or roll on the floor begging to go back home.

Some "library mom" mothers sit patiently, with a bag full of activities to do with their children while they wait. They are in control and their children feel the comfort of that fact, looking up to their smiles of reassurance. I think about how strong some of them are, putting on a happy face on the outside to calm the fears of their children while inside they are aching. And it makes me ache for them too.

Other moms are frustrated. Their faces make it obvious that they have waited too long to get into the doctor after traveling from afar to get here so early. They are tired. Not only from waiting here while trying to keep their child happy, but they are tired of searching to find out how they can best help that struggling child of theirs. They have racked their brains to figure out the best strategies. They have waited on endless phone calls to insurance companies to try to get various tests covered. They have changed diets and tried countless medications. And no matter what they do they know they will never be "done."

They are scared because they don't know what the future holds for them. For their child. For their family.

I know this because I have been there. I have been in their shoes.

And my heart reaches out to them even though I don't say a word.

Lucy walks along carrying her jack-o-lantern bucket full of "stuff" behind me. I think to myself how happy I am that that thing is finally not so out of season...it's relatives are quickly filling up store shelves in preparation for a holiday that is seemingly still so far away.

I look at Lucy and I thank my lucky stars that she can communicate. That she can walk. That she smiles at me and it squishes her cheeks up and out, making my love for her take an even tighter hold on me.

We check in.

We are there to test for growth hormone which she's tested deficient in twice. The plan is to put in an IV and take blood at half hour increments all day to get an accurate reading. I'm scared. I know from experience that her veins are deep and tiny, and that she is strong. But I, just like those mothers lining the halls, am trying to put on a brave face.

The nurses are kind. They treat her like a queen but she knows trouble is brewing. I am sad that she's worried, but I can't help but be glad that in her mind she "gets it."

The nurse asks how I think she'll do with the IV. I tell her that although she was amazingly compliant last time we drew blood, every other time (and there have been a lot of them) we have both emerged crying. Lucy is obstinate. Her smile has faded long ago. She doesn't want to sit in the right chair. I try to tuck her into my lap and reassure her she will be ok but she begins to flail. Another nurse is called in. The chair is changed into a table and one nurse asks me to climb up and straddle my daughter's legs. I whisper love into her un-hearing ears. She is in misery. So am I. Drips of blood are splatting on the floor but there is still no IV in place.

The "child life" team is called. An "IV specialist" team is called too. We wait each in our silent misery.

Two men on the IV team arrive, one tall and slender, the other with large metal earrings framing his kind face. They find a good vein and wrap the rest of her body tight in a blanket like a cocoon so she can't squirm. They try for the vein in vain as Lucy pleads with me to go home. A "child life specialist" is blowing bubbles that Lucy doesn't see through her tears and wails.

She tells me over and over again "I want to kick!" She is so frustrated that blanket is sucking her freedom right out of her. Distraught and ready to give up they happen to notice a succulent vein in her foot. We talk to Lucy and promise her we'll just try one more time. She holds surprisingly still and suddenly the needle is in. Everyone in the room (now filled with helpers) takes a sigh of relief.

The rest is easy.

We are wrapped up together on the chair all day. All the activities we brought to do together sit untouched because she falls asleep after a short game on my iPhone (one of the medicines administered with the IV is a relaxing one). I wish to myself that they could have given her that before all the needle pricks. I read my book club book as she sleeps sprawled on top of me. I am so uncomfortable but so in love with the fact that I get to have her so close to me, softly breathing as her body melts into mine (Lu is not a snuggler).

Finally by mid-afternoon we are done.

They un-tape her poor foot and have her walk around and take a drink before they'll let us leave.

As we walk back down the corridor and out to our car I wonder about all the other procedures going on there that day. I say a silent prayer for those children and parents who are suffering there. I also offer a prayer of thanks that we have such places as this to bring our children. I'm so thankful for the nurses who are so kind. For modern medicine that can help us make diagnoses and correct things that go wrong.
I'm so grateful that instead of the oxygen tank or crutches or broken hearts others are taking away from their hospital experiences we take with us only some deep bruises and a sticker reward Lucy struts proudly away with.

She is drowsy the rest of the day. After falling asleep in the middle of the kitchen floor I move her to the couch.I hope that little sleeping beauty somehow maybe dreamed about how good it was that she did that "hard thing" that day and that it will help us get more answers that will help her in the long run.

And I hope we won't have to do that ever again.
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