Category: Hospital

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Self-Care during Hospitalizations

I’ve learned a thing or two about how to survive Aidan’s hospitalizations and am writing it down to remind myself as much as to help the next person. It’s a lot, that’s for sure, but the more work I’m able to put in at the beginning, the healthier I can remain throughout. This is not a how to post. Let me start with the punch line: Figure out what you need and do THAT. Here are...

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On Receiving

I recently found myself recalling our home renovation project to a friend. It made me go back to the Bowie House blog and re-read everything. I still can’t quite believe my community came together to make my home accessible for Aidan. Amazing! I have a few posts I’d like to re-share from those days. Enjoy! ***** In discussing our home remodeling project with a friend, she remarked that I receive with such grace. I know I’ve been...

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Say it Again

It’s my most favorite time of the year. Sure Christmas is over but now Aidan and I get to go speak to the pediatric nursing students at Yale. I believe so strongly in parents and professionals working together that I will continue to take every opportunity to help them help us. I’ll definitely tell them how important presumed competence is to me. And since they’re nurses, I’ll tell them that I’m convinced nurses saved Aidan’s life...

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I am Titanium, for real.

    Aidan is five weeks out from having his spinal fusion. Two titanium rods were placed from his T3 all the way to his pelvis. That’s a lot of metal. His scoliosis was significant. It effected his ability to sit up and to walk and would eventually have compensated his health because of the scrunching of his internal organs. His bottom rib was sitting ON his hip bone. You probably can’t even contort your...

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Home Again Home Again Jiggidy Jig

The truth is, the doctor gently stroked Aidan’s hair the entire time he explained recycled blood and intubation. He remarked several times that we’re a team and would make decisions regarding pain control together. The truth is, Aidan’s nurses were exceptional. They were calm and friendly, fully present and competent. They patiently answered our questions and accepted our observations. They encouraged us to call at 2am just to check in if we needed to. The truth...

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Titanium Tooshies and Summer Grass

I just got back from a drive with Aidan. Yes, five days after major reconstructive surgery and Aidan is driving. There is nothing simple about that statement. Last Wednesday, Aidan’s spine was straightened. It took eight hours to place two titanium rods which will hold him upright and give his back a natural sway. This was the hardest day. My siblings came to the hospital and fed us chocolate and read trashy magazines and helped...

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Showering with a Super Hero

I’m reposting what I wrote last year (with some edits) when Aidan had his first orthopedic surgery. We’ll be in hospital housing again and the weird world of children in hospitals instead of at home. ***** I showered with a Super Hero this morning. Two dinosaurs and a monster truck were there also, these forgotten sentries of innocence. We’re staying in hospital housing because my son is having surgery. In this case it’s a beautiful...

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Hospital Hangover

Meet my friend Sue. We’ve been on many road trips together over the years. The moment we get into the car we have things to talk about, problems to solve, emotions to unload, stories to tell. There is no small talk, only the quick jumping in to the place where we left off. We are busy with the work of doing life together. On all of our road trips Sue and I have never gotten lost....

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Last Rites

The NICU had strict visitation rules. Only two people by the bedside. The unit was small and the isolettes were packed in like sardines. There was only enough room for the necessary machines and one rocking chair near your baby. It was an old NICU in need of revonations, but for the time, we were all in each other’s business. Aidan was a full term baby in a NICU full of premies. One day the...

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I’m in Doctor Love

I could tell you that when I walked into the hospital there was a man playing the piano for me. I could tell you there was tons of natural light everywhere. I could tell you that carpeted floors kept the noise to a minimum and gave the hospital a calming tone. I could tell you that the hallways were wide enough for Aidan to drive through and people smiled as they walked around him and...