Charlotte's Journey Home

Just a Regular Kid, Sort Of


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Six Month Checkup or Remember? Charlotte is a Heart Patient

Back in October I reported that Charlotte’s heart was doing well, but not as well as we would all like.  Dr. Young asked us to come back in six months to see if the numbers, specifically the diameter of her conduit and the gradient blood flow into the right pulmonary artery, were holding steady.  As the appointed date of the check up drew near, I once again held my breath. Charlotte has been growing like a weed and she’s been more tired than usual, The combination didn’t, in my mind, bode well.

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November 2013: Phil’s goofy beard courtesy of “Moovember”

Last week, I roused Charlotte earlier than usual and we headed to Lurie Children’s Hospital for our 7:30 a.m. appointment. Charlotte had an EKG and an echocardiogram, as usual.  The pressure across her conduit measured at a 52 degree gradient. With blood pressure at 100, that means that her gradient is about half of her systemic blood pressure.  It is roughly the same as our September visit and a bit higher than Dr. Young would like. Since her EKG and echo looked about the same; neither the valve nor the conduit seemed to be leaking; and there was nothing in her physical exam to cause alarm, Dr. Young said we could come back in a year for our next check up.  When that gradient hits 60 or above, we’ll have to discuss another catheterization and, possibly, a “conduit revision.”

Good thing Charlotte didn’t quite pick up that “conduit revision” means surgery; she was too busy telling us how horrible her leg felt after the last catheter procedure and that the only good thing about that night in the hospital has been that she got to eat breakfast for dinner (score 1 for the 24 hour “room service” at the new hospital!).

My heart thumped in my throat when I heard “conduit revision.” When she was a baby, she wasn’t scared. It's Almost Moving Day! Prepare to be AMAZED.She just toddled in to the hospital, charmed everyone around her, woke up groggy but smiling, and kind of forgot the whole thing rather quickly. Now, my lovely almost 9-year-old will get it and be scared.  And I fear the day she hears Dr. Young say that it’s time to consult with Dr. Gossett and Dr. Backer.

This is Charlotte’s reality–she will need more heart surgery, probably sooner rather than later.  In January 2005, Dr. Cuneo of RUSH Northshore told us that she might need as many as 3 valve and conduit replacements. She estimated–based on growth spurts–18 months, 7 years, and adolescence.  We eked out to 20 months and 7 years old is long since passed. So, I hold my breath and probably will continue to do so until it’s time to forge ahead, and be strong for Charlotte’s sake.

Now, for the important numbers: Since her last check up (remember, October 2013) Charlotte has grown TWO INCHES. She is now 4’9″. (Or was last week. I think she sprouted again recently.)

And now a word for our sponsor: Join Charlotte, Philippe, and I as we Move for the Kids on May 18. Team Charlotte will join the Children’s Service Board and work to make the CSB the leading fundraising affiliated organization for the third year in a row. I’d love for Team Charlotte to lead the charge–so if you even if can’t walk, please click on the image below and make a donation in honor of Charlotte, or your own favorite heart patient :-). We’ve built a new hospital and now we need to keep the philanthropic funds coming in to assure that Lurie Children’s Hospital continues to be one of the best in the country. Thanks!

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Children’s Memorial (New) Hospital Update (& blatant appeal!)

Many of you (who live in Chicago) may already know that Children’s Memorial Hospital is in the midst of planning an incredible improvement to our plant and facilities–we will be building a brand new hospital, adjacent to the new Prentiss Women’s Hospital at Northwestern Memorial Hospital. CMH will remain a completely independent entity, but the proximity to NMH will benefit patients in terms of proximity for research collaboration as well as the maternity ward.

Once the hospital opens in 2012, mom like me will not have to be miles away from their children while mom recovers from birth and newborn gets critical care.

Kids like Charlotte will benefit greatly from having pediatricians able to easily collaborate with adult specialists. As care and corrections for congential heart defects has improved, the U.S. now has more adults with CHD than children. As I’ve heard a lot of heart folks say, “It’s a great problem to have!” And it means we need to learn more about how to ease kids like ours into adulthood.

Here are some specs on the new hospital:
– There will be 276 inpatient beds in the new hospital. That is a 12% increase from quantity of beds now. However, it will give us a 25-30% increase in Patient Day Capacity. This is because all of the rooms are private – therefore, there will be no restrictions on who can occupy a room.

– Each new room will be 290 square feet and private – with room for the patient, their families and the doctors/nurses. Currently, the rooms are 125
square feet with multiple beds. Huge improvement!!

– There will be 25 procedure rooms – compared with 20 today. There will be
42 bay emergency rooms – compared to 26 today.

– The hospital will be 21 stories. There will be a sky lobby on around the 14th floor. There will be an outside garden area.

An endeavor like this is impossible without philanthropy. Please think about clicking here and participating in this amazing improvement for our already incredible pediatric care in Chicago. There is an area where you can “earmark” your donation for the new hospital or any medical service that compels you.