That’s right folks, a Charlotte Amalie update!

(Lungs/Neuro) Charlotte’s still having apneas while sleeping (forgetting to breathe for a period of 20 seconds or longer). The past few months have been marked by a nice little fight between the Pulmonologist and the Pediatric Intensive Care doctors about this situation. Pulmonology wants Charlotte off of the ventilator, with the thought that we are just teaching her brain to be lazy by breathing for her. The PICU team feels that it is irresponsible to take Charlotte off of the ventilator, particularly when she is still having events. To be fair (we agree with the PICU, but wanted to give Pulmology our best effort of compliance), we tried taking Charlotte off the vent for six weeks. She was still having events, and after a readmission for a GI bleed, the PICU refused to discharge her without an order for a home vent.

So we’re still on the ventilator, with the hopes of having a sleep study arranged sometime soon. She’s still on a Cystic Fibrosis style regimen for her lungs, with a twice daily routine of Flovent, CPT, hypertonic saline neb, and Atrovent. Being a preemie is rough on the lungs. In case you didn’t know.

(GI) As far as that GI bleed mentioned above, Charlotte needed to have surgery to completely replace her g-tube in December. We were at church when we noticed there was blood in her extension tubing, and after attempting to ignore it and hope it would just go away, the bleeding got worse. We took her into the pediatrician’s office and the poor weekend doctor (who always sees Charlotte in a moment of crisis and never quite knows what to do with her) admitted her. We had high hopes of staying out of the PICU this time, but her labs kept coming back worse and worse and it looked like she might be headed for a transfusion, so we transferred over to the PICU. Once we were settled there, Charlotte felt much more at home and her levels improved. Impressed with her improvement, Peter and I felt that he would be fine to leave on a short underway with his ship. (He’s working on a ship for the Navy). She was scheduled for an endoscopy, and Peter left for the week, confident that she would be home in a day.

During the endoscopy, I get a call asking if I can return to the floor (I was grabbing lunch) because the surgery team needed to talk to me. We found out that the gtube had essentially eroded the lining of her stomach, to the point that there was nothing left for the tube to anchor against inside her stomach. They couldn’t even find the tube in her stomach, it had retracted into the tract, and her stomach was trying to grow back over the tube site. They had to completely re-do her gtube and close her original site. It was a blast, and a week later, we finally went home.

Lesson learned: Never assume anything about Charlotte.

In other GI news, she is scheduled to attend a feeding tube weaning program at CHOC in April. Keep her in your thoughts and prayers that she will be healthy and able to fully participate in this program!

(Immunology/Infectious Disease) CA has been battling c.diff for several months now. We’re on our fourth treatment course, and praying with every bone in our body that this is it. {C.diff provides nothing but terribly nasty diapers. Not.fun.} We should know more in about a week. Please let us kick this!

We recently had some test results come back that indicate Charlotte’s immune system isn’t up to snuff. It’s pretty complicated medicine, but the gist of it is that CA isn’t remembering how to fight an illness, even if she’s battled that illness previously. There are still more tests to run, but currently she’s not showing any immunity to several of her vaccines, and generally low immune levels. The doctor is unsure at this point if her immune system is just severely premature (lagging more than the rest of her development) or if is a case of Common Variable Immunodeficiency. If it is the first, then there’s not much we can do about it. If it’s CVID, then she would be a candidate for IVIG, a blood product administered every three weeks in the hospital. It’s really expensive, and not the most pleasant process, but it would essentially give her an immune system, and it would be a lifelong battle.

We’ll give her several new vaccines, and then test her response to those vaccines in eight weeks. That’s the plan, at least.

(Eyes) CA saw the ophthalmologist in December and he said she was good to go. He continues to explain that while whatever vision Charlotte does have is essentially perfect, she does have significant scarring in her eyes from the laser surgeries, and her range of vision is severely limited. {Guess we can’t blame her running into walls solely on her lack of a cerebellum.} We’re so impressed with how well she manages with such a limited sight. Most of the time, we totally forget it’s an issue for her.

(Therapy) Still receiving Speech, Occupational and Physical therapy. Each twice a week. She’s a busy girl!

(Interests) Princesses, barbies, Curious George, Elmo, Minnie and Mickey Mouse, dressing up, anything Caleb is doing, comparing items {BIG ball, little ball– with the most amount of enthusiasm you can imagine}, coloring, “writing”, books, talking to “Nana” (refers to all grandparents) on the computer, and dancing.

(People she routinely asks for) Daddy, Uncle, Joey (cousin), Maeli (cousin), Isaac (family friend), Alan (family friend), Britta (family friend), Dean (cousin), Sunshine (friend from school), Aurora (friend from school), Beth (Physical Therapist), Nikki (Speech Therapist), Anne (nurse), Lauren (nurse), Bala and Papa (my grandparents) and Colby (one of Caleb’s friends from school. She’s never met Colby, but Caleb talks about her all the time).

If you have read this far, you win an original work of art from Charlotte. E-mail me your address.

And a picture of Charlotte. Of course.

Courtesy of Blackbird Ink Photography November 2012