Erik Quinn: The Heart of a Family: A Tale of Two Kidneys

Wednesday, February 18, 2009

A Tale of Two Kidneys

Erik and I headed to the children's heart center today for a blood pressure check before his renal ultrasound at the hospital. When Erik approached the nurses' station carrying his filthy stuffed dog, the woman behind the counter went into the next room and announced, "Stinky Dog is here for his blood pressure check." Today his blood pressure had come down substantially into about the 70th percentile.

The blood pressure cuff is extremely upsetting to Erik, and while he was being calmed, one of the staff members motioned for me to talk quietly with her in the hall. Erik's photo from a prior visit is tacked to the bulletin board above the nurses' station. She told me that a young woman with Williams syndrome came in recently and pointed Erik's photo out to her mother, asking if she thought Erik had WS, too. After they studied his face, they apparently both came to the conclusion that he did. Once again, I have likely crossed paths with this other family I know of but have never met. It's strange. I can never confirm this is the same woman, as privacy laws do not permit the release of her identity, but it is strangely comforting to know she has been in the same exam rooms and waiting rooms we have. Maybe someday we'll meet.

From there, Brian joined us, and we took the stairs leading to the long hallways of the hospital. After we told another woman in floral scrubs working in the imaging department who Erik was, we sat in comfortable faux leather chairs and attempted to get Erik to use his "inside voice" to let the man across from us continue to sleep. I panicked when I realized Stinky Dog had been abandoned somewhere in the building and made a note to myself to locate him after the study. Thankfully, Erik did not notice his absence.

We were finally led to a tiny waiting area separated from a glossy hallway by a saltwater fish tank. I made myself comfortable in the same chair I sat in while I was miscarrying my first baby. The same chair I sat in after I lost my second baby. And the same chair I sat in a handful of times when the doctor wanted to take a look at Erik inside of me to make sure he wasn't leaving my body like the others did. I felt a twinge of anxiety when I sat down, which was quickly replaced by a horrible craving for Chinese food. That tank with all of the fish bobbing in it has the same effect on me. Every time.

A boy of about 12 sat in the corner quietly playing a handheld video game. His mother held a computer on her lap and played solitaire. They talked about another family member who was apparently hospitalized. Erik approached them and said hello. He asked them both if they vacuumed, and the woman laughed and said that she did but that she wished her son did it more often. She introduced her son and asked Erik's name. After a few minutes of conversation, she looked at me with the very same slightly confused, intrigued look on her face I have seen many times on faces after Erik has gently held a stranger's hand and looked deep into their eyes.

She asked, "Is he always this happy?"

I smiled and told her that he was most of the time. I enjoy the reaction Erik gets from strangers. He's different, but at this point, people can't seem to put their finger on exactly why.

A friend or family member came into the small area with an update on their loved one, who apparently was hungry and wanted to sit up and eat with them in his room. Erik approached the newcomer and held her hand gently. She smiled at him and answered his questions about vacuum cleaners, looking to us periodically for a translation. They then all left us to eat lunch and wished us a nice day.

An ultrasound technician came out to get us and lead us around the corner into the small, dark room I am so familiar with. I hopped up onto the table by the machine and invited Erik to join me. He immediately began to cry. When the technician's attempts to calm him down failed miserably, I explained he was missing the gene that controls anxiety. I then gave him a crash course on elastin and renal artery stenosis in Williams, and he nodded his understanding. He mentioned another connective tissue disease, and I felt comfortable with his response. I finally was able to hold Erik still while his back was smeared with clear, warm jelly and the ultrasound wand was held closely to his body. Brian made faces at Erik, and I pressed my face into Erik's hair. Images were successfully obtained of the inside of Erik's lower abdomen. Erik was obviously very anxious, but the tears stopped. He repeatedly asked if we were all done. I told him no but promised him chocolate when the study was finished. When the technician saw the bladder and asked Erik if he needed to go to the bathroom, Erik was obviously deeply insulted. I giggled. Any reference to using the potty makes Erik very irritated.

The technician left us and let the radiologist examine the images while I went into the little dressing room and fixed the wild hairdo I had been afflicted with from holding Erik down on my side for so long. The tech eventually returned and reported that everything looked healthy with no evidence of stenosis or stones. Erik was asked if he wanted a sticker, and he said that he did not. He was already talking about locating the car. We left the department and found our way back down the hall. Stinky Dog was sprawled atop the registration desk waiting for us. On our way back out of the building, I ran back into the heart center to pick up Erik's heart-shaped foil balloon, which was still tethered to a chair in the nurses' station. I gave the staff a thumbs up and said I would be talking to them soon.

We exited the place out into the crisp air and sunshine, knowing all was very well.

At least for now.

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Anonymous Erik's Rock Star Auntie~ said...

I love it! I almost feel like I was there... your writing is fantastic! "Brogie's new word"

Erik passing on the stickers is sooooo Brayden and if Erik passes on band-aids soooo Brogan, Brogan will cry not during the vaccine nor after after but when the bandaid is placed! So we always say no bandaids and I get stuck holding a little cotton on the site!

I am surprised to say this but I am glad Stinky dog was found and made it home with Erik!

Missin you all!!!

3:58 PM  
Blogger Michelle said...

So so glad it all turned out well in the end. I hate having to bring Ari to anything like that - anything that's going to make me have to hold her down...ugh...I shutter at the thought.
I was laughing out loud at the chinese food I'm going to want it for lunch!

4:28 AM  
Anonymous Anonymous said...

Gua said..


Love, Mom

8:11 AM  
Blogger Noel said...

i am glad things all checked out well.

8:14 AM  
Blogger Aspen said...

You make those appointments sound remarkably easy. I'm glad it went so well. Good news is always worth leaving with a smile and thumbs up!

10:20 AM  
Anonymous Anonymous said...

Holy smokes!! Were you just at Jaxson's last visit to the U of M on Monday or what??? He had to have an Echo and an EKG and multiple blood pressure readings and he was not happy about any of them!!!! WOW!! That is uncanny how similar the two visits sound!
MOM to Jaxson-5 WS

3:10 PM  
Blogger Diane said...

Anna gets renal ultrasounds too but hers are for a neurogenic bladder. Thanks for sharing this experience from your point of view!

I just love how you write.

10:32 AM  
Blogger Michelle said...

I'm glad to hear everything came out good with the results from the u/s!

7:18 PM  

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