Annie Update

Annie is still sick.  Today is day 9 of this nasty illness.  She hasn't been this sick in a really long time.  She has been coughing nearly non-stop all day and night for the last several days and has been having a really hard time with thick congestion in her throat.  She's been requiring suctioning regularly around the clock, but today was the first day that we went more than an hour without suctioning!  VERY small progress, but I'll take it and am happy to see it.  I think this illness would have slammed even a typically healthy child, but for Annie it's always much worse.

Annie has been continuing to have a persistent rattle in her breathing and after we listened to her lungs and heard the rattling there too, we became a little nervous, especially since her fevers are still hanging out around 101-102 degrees.  Fortunately her seizures have remained fairly well controlled since her scary episodes 9 days ago--they are not completely gone, but back to their usual frequency.

It's hard to tell if the rattling in her lungs is from pneumonia or is just being reflected from her upper airway.  So I took Annie back to the pediatrician again today to have her checked out for pneumonia.  She's never had pneumonia before since she's always maintained a good, strong cough, but her cough hasn't always been productive this week as she's grown so weak from coughing so much.  And with pneumonia being the most common cause of death with Aicardi Syndrome, we don't treat it lightly.

The pediatrician thought Annie's lungs sounded fairly clear, and her O2 sats were around 95-97.  Not bad, but she's usually always at 100.  If her O2 sats had been in the 80s he would have hospitalized her immediately.  We've always thought it would be convenient to have our own pulse ox machine at home, and our doctor today agreed, so he ordered us one and we'll get it soon, which will bring some peace of mind.  So then we went to the hospital for a chest x-ray.  It was torture for Annie getting the x-ray, but fortunately it was completely clear!  Whew!

Annie also had a Respiratory Viral Panel done at the hospital--just a nasal swab to check for about two dozen different viral infections.  And surprisingly, that came back negative as well.  We suspect that she had some kind of terrible viral infection last week, but all the phelgm and congestion she's struggled to clear has turned into bronchitis or a sinus infection.  So we'll start her on yet another round of antibiotics, hoping and praying that this girl can finally catch a break, get healthy and strong in plenty of time for her spinal surgery in 3 1/2 weeks, and sail through without any problems.  Once she has her spinal fusion, her lungs should be healthier and stronger at times like this since her left lung is currently being crushed by her scoliosis.  We've just got to get her healthy for surgery!

For now, I'm most grateful for a husband who could work from home yesterday so I could take a 4 hour nap.  We're still exhausted but I think Annie will turn the corner really soon with the antibiotic, and hopefully we can all start getting some sleep again.  We really appreciate thoughts and prayers on her behalf.