Monthly Archives: June 2012

Elie’s Visitation

Elie’s visitation will be tomorrow, Friday June 29, 2012 from 3-6pm. Please come by anytime.

H.M. Patterson & Son-Spring Hill Chapel
1020 Spring Street NW, Atlanta, GA 30309 | 404-876-1022
hmpattersonspringhill.com

The funeral home is located on Spring St in Midtown at 10th Street (northwest corner). Since Spring St is one way headed south, find Spring St from 14th street or higher. Headed south on Spring St from the north, HM Patterson will be on your right as your approach 10th. Map/Directions

 

We are planning to have a smaller private memorial on the farm in Virginia at a later date, so if you are not able to come by tomorrow, please do not worry. We would also like to send a small package to anyone else who would like to honor Elie from elsewhere. We will post more about that idea at a later time.

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Rest in peace Elie Bean

I remember just after Elie was born in the early morning hours on December 28th saying aloud that she was a Wednesday’s child, but not immediately remembering from the rhyme what that was. The attending physician began reciting it as if to also remember …

Monday’s child is fair of face,

Tuesday’s child is full of grace,

Wednesday’s child is full of …

… only to trail off when he got to that point and then muttering that he too couldn’t recall. I suspect it really came to him as it did to me. Wednesday’s child is full of woe. Not being superstitious I remember smiling at the doctor’s sudden forgetfulness.

We received Elie’s diagnosis on Wednesday March 14th, so I guess it was altogether fitting that she chose this morning, Wednesday June 27th to say goodbye to us, taking her last breaths in our arms, a day shy of her 6 month birthday. She was just as beautiful on her last day as she was her first.

We are feeling tired and empty and will miss her dearly for every day of our own lives, but thankful to be surrounded by family and comforted by our friends, colleagues and the many members of our medical team who grew to love her just as much as we did.

For those of you who have been following this blog these many months, it should be known we paid little attention to the poem. Our goal became to keep our baby girl as happy and comfortable as possible despite her uncertain future. There were many hours spent playing, reading, singing, swimming and taking Elie with us on long walks. Balloons and kaleidoscope apps were favorites. Time spent with our families and friends were also special, a trip to Charleston for her Aunt Dana’s wedding particularly memorable.

For all who have kept us in your thoughts, hearts and prayers these many months, thank you.

Rest in peace Elie Bean.

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Back in the PICU

Elie, Mari and Cheez-it.

Monday morning Elie went unresponsive and stopped breathing – her heart rate dropping to around 20 BPM. Nurse Agnes and Mari were able to successfully administer extra oxygen and rescue breaths so that by the time the paramedics arrived, Elie was breathing on her own again. Following a short ride to the hospital she was admitted back to the PICU, under the excellent care of many of the same CHOA doctors and nurses that looked after Elie following her G-tube surgery a few weeks ago.

We will likely be here a while. Despite our best efforts (increased frequency of cough assist and albuterol), the atelectasis in her right lung has gotten worse and is also now affecting her left lung. Her respiration rate is slowing and she requires more oxygen to keep her saturation levels up. Her daily naps are increasing in both frequency and duration. She often breaks into cold sweats and her cries are growing weaker. As our pulmonologist put it to us last week, she’s running a marathon every day.

We’re continuing to work with our GI docs to come up with a better plan to address her nutrition. The respiratory therapy is pushing air into her stomach as well as her lungs, leading to the bloating and discomfort that results in her vomiting.

While Elie is often anxious she doesn’t appear to be in any significant amount of pain. In between all her evaluations and treatments we’ve been reading to her, playing music and watching videos. Cousin Erin is visiting with us as I write this and we’re expecting Uncle Rob to stop by later this evening.

Thanks as always for keeping us in your thoughts.

 

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Bubbles the Fish

Albuterol treatments with ‘Bubbles’ the fish-mask. She actually seems to enjoy this one.

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Weird Science

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Two weeks since our last post?

Its been hard to update, but here goes…

Elie began throwing up after most daytime feeding about a week and a half ago. She was still ok at night however, as we attempted to work with GI on getting to the root of the vomiting. Then I heard her coughing in the middle of the night and had to scramble for the suction machine to clear her out. At that point we started keeping her pulse-oxygen saturation monitor on at all times. Unfortunately, we could not keep her oxygen level up at a comfortable level with just suction and the cough assist. As a result, Bean is now on supplemental oxygen 24hrs a day.

The vomiting seems to be improving a bit since…Nurse Agnes started last week! She’s been a great help getting us more comfortable with the machines, and hopefully soon will allow me a break. Nonni was here all week last week as well which let Elie have an extra playmate besides old Mom and Dad.

Elie is a bit tired today after a particularly rough night. She’s wakes up every hour or so these days, which has exhausted us all.

So now we are tangled in even more tubes which threaten to confine us to the house. But we’re fighting it! About to take a Fathers Day walk with Daddy, just now involves an oxygen travel tank, some hoses and an oxygen monitor.

Sorry about the delay in posts, not to mention Elie’s big THANK YOUs for the books, rainbows and gifts from Amazon!

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Weekend adventures

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What we’re reading.

Rebecca Perez asked what we’re reading today– we just got three great new books:

Click Clack Moo, Cows that Type from Bitsy

B is for Beer from Jes

Choo Choo Noises book from Khristie

Great stuff!

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