One year later

A year ago today, Elisabeth was rushed to Children’s National Medical Center.  She almost died minutes after she arrived.  I can remember a swarm of medical professionals surrounding her — there must have been at least a dozen of them.  Each one was responsible for one part of her body.  “She’s not breathing,” said one.  “Her pulse is dropping,” said another.  “There is blood coming out of ears!” said a third.  I thought I lost her just then, but she made it through the night.  I can’t say whether it was better for her to survive that day.  She suffered greatly over the next nine and a half months, but family and friends got to say good-bye, and she got to show how strong she was. 

Elisabeth’s grave is still unmarked but Mom and Dad are thinking about how to honor her.  We want something that shows how much we loved her.

Marker of Marie Estelle, who rests near Elisabeth

 

Elisabeth’s 9th Birthday

Elisabeth would have been nine years old today.  Many of reminders of Elisabeth remain, including her toys, books, clothes, wheelchair, and more.  Sadly, she is now gone, but most certainly had a good life before her terrible illness.

Many friends and family members came to Elisabeth’s funeral, including many of the hospital doctors and staff who cared for her in her final months.  Mom and Elisabeth’s teacher Kara gave touching eulogies.  Many generous people have also given money to the St. Coletta School in honor of Elisabeth.  Mom and Dad are very grateful for everyone’s support during a very difficult time.

Elisabeth is now buried at Congressional Cemetery in Washington DC.  The historic cemetery is the final resting place for many notable people, including controversial FBI director J Edgar Hoover and his lover Clyde Tolson, among others.    The famous composer and US Marine band leader John Philip Sousa rests just a few steps from Elisabeth.

The ground is still settling on Elisabeth’s grave.  A few weeds and a wasp’s nest join her today.  Soon enough, she will have a glorious marker of her life on this site, but not just yet.

Funeral Arrangments

The funeral will be at St. John’s Church, Lafayette Square, Washington, DC at 10 AM, Monday, June 29, 2009.  A reception will follow.  Elisabeth will be buried later that day at Congressional Cemetery.

A visitation is scheduled for 3-5 PM and 7-9 PM on Sunday, June 28 at Pumphrey Funeral Home (7557 Wisconsin Avenue, Bethesda, Maryland, Bethesda, 20814-3501, near metro).  Return to the blog for updates.

In lieu of flowers, donations may be made in memory of Elisabeth to St. Coletta School of Greater Washington, 1901 Independence Avenue SE, Washington, DC 20003.

For those traveling from out of town, we recommend the Omni Shoreham hotel.  Seniors can ask for the senior rate.

A New Journey Begins

Elisabeth Reeves Eydt died peacefully at 12:30 AM, June 21, 2009, with her parents by her side.  Arrangements will be published soon.  Our angel is climbing the stairs to the gates of heaven…

August 14, 2000 - June 21, 2009

Crisis

My blood pressure is dropping very fast.  They’ve upped my oxygen from 28% to 100% and my blood system is not responding.

Bone infection

Lots of bad news.  An MRI scan showed that the exposed bone in my wound is now infected.  My white blood cell count has skyrocketed, which may be the result of a new medication.  I am also growing faster than usual, with my girth rising from 62 to 70 cm in the five days after surgery.

Tubes

I am fairly stable right now, but some of my mechanical supports are not.  Just yesterday, my wound vac went down for a few hours.  The weekend staff were not experts at configuring the device, so they had to call the manufacturer and walk through a few steps.  If the vacuum is off, there is a much higher risk of infection.  Fortunately, my exposed bone and surrounding flesh do not appear to be infected right now.

I now have wider dialysis tubes.  My blood urea nitrogen (BUN) levels were skyrocking into the hundreds when they should be in the teens.  The thinner tubes weren’t handling the blood flow required to filter my blood.  I didn’t do so well with the new tubes the first time, but now I am used to them.

An new infection in my trach stoma is being treated with a 10-day course of ampicllin, an anti-biotic.  It doesn’t have the side-effects of the much harsher anti-biotics that would be used to treat a bone infection.

Daddy now lies next to me when he comes to the hospital

Another tummy tuck

The surgeon removed 3.5 liters of fluid this morning, trimming me down to 62 cm.   I went through the entire surgery without extra oxygen or a ventilator.  My heart rate and blood pressure are normal.

Daddy next to me

Daddy finally got in the new high tech bed after several weeks.  The bed is so intimidating.  It’s like a balloon that will pop if a big person gets on top.  But the nurses assured that wouldn’t happen.  Daddy put his hand on my back and on my tiny shoulders.  My heart rate slows a bit when he’s with me.  It’s hard to tell if that is an emotional response or a physiological one.   Are they really different?  Does it matter?  Either way, my ever so small world gets better for a few moments.

I have fluid reduction surgery again tomorrow morning — just in time, becuase I was starting to get uncomfortable.

Hygiene

Daddy came and cut all my finger and toe nails.  He also rubbed moisturizer in my hands and around my legs, arms, and shoulders.  He cleaned out my J-tube stoma, which was getting messy.  He brushed my teeth and noticed that another one of my baby tooth is getting loose.  He wants to get a tiny brush to comb my eye lashes, which are really long but slightly tangled.  Funny thing is that my nails continue to grow as fast as ever, but my hair does not.  I’ve been here over 9 months and still don’t look like I need a haircut.

I don’t react much to the grooming, but when my Daddy puts his hand on my forehead, I let out a small sigh.

Awake and peaceful