Lily's Back in The Hospital

The hospital staff at MUSC gave Lily surgical caps, gloves, and a "surgical doll" to help her understand the procedures that were going to take place before her open-heart surgery.  She didn't play with them while in the hospital, but the weekend she came home, she and Isabelle enjoyed performing "surgery" on the baby.

Little did we know that just a week and a half later, Lily would be back in MUSC...

After going home on Friday from open-heart surgery (see my previous post), we had a quiet weekend.  On Monday morning around 5:30 a.m. Lily Rose began running a 101.5 temperature.  We visited our pediatric cardiologist office where he performed an echo to rule out out PPS (fluid build up around the heart), and he also drew blood cultures and bloodwork to rule out general infections or blood infections.  After they came back normal, we chalked up the fever to a general virus since Sarah Mei was just recovering from a 48 virus.

After 5 more days of fever, we returned to the cardiologist office on Friday for another echo, chest x-rays, a throat swab  (to rule out strep), more blood work and blood cultures.  Still nothing conclusive.  On Saturday and Sunday Lily Rose's fever climbed to 103 and 104, and on Sunday we noticed a few little bumps on her face and arms.  We knew something was brewing.  By Monday, when we arrived at the pediatrician's office  Lily's rash had spread considerably and her fever was continuing to hover around 103 and 104 even alternating between Tylenol and Advil.  Dr. Flannery, our pediatrician, tested her for  flu, RSV, strep, drew more blood cultures, and blood work and decided to send her to a highly specialized pediatric dermatologist in our area to determine the nature of her rash.

On Tuesday, we visited the pediatric dermatologist who immediately identified the rash as Erythema Multiforme and wanted Lily Rose admitted to a hospital with a Pediatric Dermatologist specialist.  Unfortunately we don't have one in Charlotte who sees patients in the hospital.  Strange??  Our best option....travel back to MUSC where our cardiology team and a dermatological team could coordinate Lily Rose's care.

At first it wasn't clear whether Mytoplasm (an infection in the lungs) or an allergic reaction to her Lasix (a drug commonly taken after heart surgery) was the culprit for the alergic reaction; however, after a clear chest x-ray, and a consult with infection disease, the prevailing thought is that Lily Rose had a VERY unusual allergic reaction to Lasix.  Right now she is on an antibiotic, as a "just in case" for  Mytoplasm while we wait to get titers back to confirm or deny whether she in fact has it.  She is on a new dieurectic.  They have stopped her aspirin (also part of every post-Fontan surgical regime), and we wait and see if the rash dissipates or continues evolving.

Thankfully she had no fever for the last 24 hours...the first 24 hour, fever-free period, in 11 days!  She is itching and the rash, as it develops, turns into patches which resemble almost burn-like areas.  Unfortunately she is limited to Tylenol and Benadryl, since introducing new meds is not a good idea when trying to pinpoint a trigger for Erythema Multiforme.  Consequently, part of the time she is quite uncomfortable.

However, she had a few hours earlier today when she felt pretty good.  Torie and Isabelle made the trip to Charleston with us.  I had to laugh when Isabelle and Lily's toy of choice was a blood pressure cuff, and they both knew what to do with it.  You know your children have spent too many hours in a hospital when they have baby dolls and play dishes and they chose a blood pressure cuff to play with instead:)

Isabelle's pre-op is on Friday and surgery is on Monday...it looks like the 2 girls may be sharing a hospital room afterall.  Pray for us and that we will bring glory to God in all of this!