Posted 3/19/2012 6:11 AM (GMT -6)
Brothers and Sisters
Nothing to worry about! All is fine Gigi, her Mom and Dad are home.
Our daughter and son-in-law sent the below out to family, I thought I would share this with all of you.
I am so proud of my daughter, son-in-law and our little lady!
Thank you for all your prayers and good thoughts
Dear Family and Friends:
After 13 IV sticks, 3 spinal taps, 3 CT scans, 2 echocardiograms, 2 ultrasounds, a biopsy, a PICC line, 3 stitches, tons of blood tests, a blood transfusion, an Immunoglobulin infusion, and 19 days in the hospital (9 nights in pediatric intensive care-picu) we are happy to report that our little girl came home this weekend.
So what happened? Gabriella (aka Gigi) had a fever of 103 and a rash around her belly button. Her pediatrician told us to go to the emergency room and our local community hospital admitted her. (yes, we were surprised by this as we thought it was a simple cold) At the time they thought she probably had an infection which could be treated by IV antibiotics over 24-48 hours. During her hospital stay, the rash began to spread and her eye became red and puffy, making her unable to open it. After two days, one of the doctors sat us down and said that they couldn’t help her and that she required more specialized care. Children’s National Medical Center (CNMC) in DC was called to transport her emergently to Walter Reed Army Medical Center. CNMC has a pediatric transport team and the equipment needed to transport a sick infant. As you can imagine, we felt very scared and the trip from Annapolis to DC was not easy.
Within the first couple of hours at Walter Reed, Gigi was visited by approximately 20 different doctors, representing various specialties (pediatrics, critical care, infectious disease, ophthalmology, etc.) They decided to move her from the pediatric floor to the picu because they didn’t know what was going on and believed she needed to be monitored more closely. Gigi spent 9 nights in the picu, where she was hooked up to machines for 24hr monitoring; she encountered endless tests and visits from the various specialists. Her belly button area and eye continued to swell, as did each site where she was stuck with a needle. (her little hands and feet became alarmingly inflamed) This was a scary time for us because no one knew why it was happening and the possibilities were endless (was it a brain abscess, leukemia, a rare fever syndrome??). They treated her for meningitis and Kawasaki’s Disease because neither could be ruled out and have severe consequences if left untreated. She was put on some heavy-duty IV antibiotics, administered around the clock. Specialists at NIH were consulted and she was entered into a research protocol with genetic testing for rare fever syndromes.
One of the primary concerns was that even on the antibiotics, Gigi continued to have fevers daily to 103, her level of inflammation in the blood was super high (higher than some of her doctors had ever seen in an infant) but she acted normal (never had issues eating, sleeping, going to the bathroom) and her rash started to go away. Even when one of her eyes was swollen shut and oozed puss, she continued to look at us with her “good” eye open. Everyone wondered why the antibiotics weren’t stopping the fever and this made her an especially “interesting case” to the doctors.
At this time, they believe she had a viral respiratory infection, which made her more susceptible to a bacterial infection. She may have had a bacterial infection of the belly-button (omphalitis), a bacterial infection of the eyelid (periorbital cellulitis), and may have had bacteria in the blood (bacteremia). This series of infections may have triggered Sweet’s Syndrome. Sweet’s is very rare in children (less than 100 reported cases worldwide) and results from an excessive inflammatory reaction to something. (in this case we think the infections) In other words, Sweet’s causes a patient’s body to overreact to bad things. For example, for each site the doctors tried to take blood or put an IV, normally the area would get a little red as the body tried to heal itself, but in Gigi’s case, her whole hand would swell and turn red. It is unknown if she will have this reaction to every cold, fever, or shot; we pray that won’t be the case. Although, children can grow out of Sweet’s, so it is also possible that this will never happen again.
The doctors are still not 100% sure of what it was that made Gigi so sick. She will continue to be monitored closely at Walter Reed through follow-ups with pediatrics, cardiology, immunology, dermatology and rheumatology until they rule out a few other things and are confident she can stay healthy. In her short life, she has seen more specialists than both our immediate families combined! Maybe she will go into pediatrics someday…
Overall, we feel so very grateful to God for giving her doctors and nurses the knowledge needed to heal Gigi. Her care at Walter Reed was excellent. We had a number of her doctors come in on the weekend to check on her and they graciously gave us their personal contact information. Her nurses in the picu were exceptional. They not only provided stellar medical care, they did it with such warmth we can’t ever do enough to thank them. For example, one night Jen woke-up at 3am to the sound of one of the nurses holding Gigi and singing to her softly. It’s hard to put into words just how much these acts of compassion touched us.
Thank you for your thoughts, prayers and kind words and actions. We are so fortunate.
Frank and Jen
PS – We are unbelievably proud of our strong, resilient baby girl!!!