Charlotte's Journey Home

Just a Regular Kid, Sort Of


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Heart Surgery Update

Charlotte on Thanksgiving Day

I spoke today with Charlotte’s cardiologist, Dr. Luciana Young. After conferring with Dr. Pophal, the interventionist who performed angioplasty two weeks ago, and with Dr. Backker, one of Charlotte’s CV surgeons, she came to the following conclusions:

The angioplasty balloon procedure was able to alleviate the RPA (right pulmonary artery) restriction a bit. However, because the conduit is small (just the right fit for the 5.25 lb. baby who received it on 5/16/2005), the opening of the RPA will probably not last very long.

Charlotte, however, is exhibiting no heart symptoms. A very good thing.

So…Dr. Young prefers to schedule the surgery for sooner rather than later. We’re looking at a mid-March date, to have her recovery week coincide with my Spring break.* I’ll have a date from Dr. Young as soon at CV surgery has processed the paperwork.

We are, needless to say, frightened, anxious and not surprised by this news. It’s very easy to forget that Charlotte is a heart patient. Certainly her heart has caused us no concern since she was released from her first hospital stay. And her feeding issues necessarily focus us elsewhere. While we knew this day would come, it feels a bit like being thrown into a cold swimming pool in mid-January in Chicago. Not good. Not good at all.

*Spring break you say? Yes, if you haven’t heard, I’ve accepted an adjunct teaching position at UIC for the spring. Given the turn of Charlotte events, the timing isn’t great, but c’est la vie.


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Cardiac Cath Update

Charlotte came through her procedure with flying colors. She did very well with anesthesia and spent the early evening resting and staring into space. This was a great improvement over the delirium tremors and other responses to anesthesia. We were able to bring her home late Monday night.

Dr. Pophal told us that the catheter confirmed the restriction in the Right Pulmonary Artery (RPA). He was able to alleviate the restriction with a balloon angioplasty procedure, reducing the restriction from severe-to-moderate down to moderate. He remains concerned, however, because the ratio of blood flow to the left and right lungs is still quite uneven. Because of the RPA restriction, the left lung is receiving more volume and velocity of blood flow. This puts Charlotte at greater risk for pulmonary disease. Finally, her pulmonary valve (the homograft) leaks quite a bit (it has since the chyllus efflusion episode in May 2005).

Bottom line? Charlotte’s heart team will confer at the cardiac conference on Monday, 12/18. Dr. Pophal suspects (and we agree) that they will recommend we schedule her second open heart surgery. Perhaps in 3 months, perhaps in 6.

I have a huge lump in my throat as I write this. We have known, of course, that the second surgery was coming. And given that she was 5.25 lbs. at the first surgery and is now 25 lbs., it’s not surprising that the surgery will be soon. But, we’ve been able to pretty much ignore the fact that she’s a heart patient up until now. Reality has officially smacked me in the face this week.

As for Charlotte–she was a living doll throughout the whole day. In pre-op, she sat on her bed and colored. Then she played with the LPN’s stethoscope for 20+ minutes. This was particularly amazing because she usually breaks into tears at the sight of a stethoscope. She liked this LPN (Ana Maria) so much that she blew her tons of kisses, too.

Just before they took her for the procedure, Charlotte started crying (it was nap time and she hadn’t eaten in 12 hours). She very clearly said, “I want mommy” and “I want my mommy.” So, once again, we have a developmental breakthrough in pre-op. (The last one was the appearance of her first tooth as we waited for her g-tube procedure.)

p.s. I had some amazing pictures of Charlotte from pre-op and post-op, playing with the stethoscope, smiling at Ana Maria and posing with Dr. Pophal. Somehow, they have disappeared off my media card. My digital woes continue.


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Cardiac Cath Procedure Tomorrow


Charlotte goes to the hospital tomorrow for her second cardiac catheter procedure. It’s been 15 months since the last one. Back then, she was tiny, spindly and being fed through a tube in her nose. Today, she’s a chatty little monkey, love to give hugs, and giggles a lot.

It’s going to a LOT harder to watch her be wheeled down the hall for anesthesia than it has ever been before.

Philippe believes that my fear about this procedure prompted my dreaming last night that I lost Charlotte. He’s probably right. In the dream, I was out somewhere with Charlotte in her stroller. Next thing I knew, the stroller and baby were gone. I looked frantically for her. Literally saved by the bell, I woke up to the alarm clock with all members of my family safely tucked into their beds.

Charlotte will be seen tomorrow by Dr. Stephen Pophal, her interventionist cardiologist. She goes to the cath lab at 10:30 a.m. CST and we expect the procedure could take as long as 4 hours. Please keep her in your prayers.