Finally, pneumonia is gone!

Well, what was supposed to be a straight-forward treatment for strep pneumonia turned into Amoxicillin for 20 straight day in which 10 of those were double strength and a second antibiotic for 5 days.  At this point, we’re hopeful the pneumonia, fluid and atelectasis are all gone.  We are hoping that we’re in the clear, at least for longer than our last stretch, but we are never really sure.

We visited with the new infectious disease specialist on Thursday March 13th and both Jeff and I felt confident when we left.  Rylee had some more blood work done, to check her other Ig levels and to check her IgG response to vaccinations.  She was tested last March, a month after she received the adult pneumococcal vaccine and we were told by the doctor in Winston Salem that her titers were fine.  We figured at that point, we were finished checking and discussing immunodeficiency problems.  However, after some additional blood work in February, Dr. Ashe, her pulmonologist, referred her to an Infectious Disease Specialist.  After spending over an hour with him and briefing him on Rylee’s history,  he discussed his plan of re-evaluating her blood work and coming up with a plan after the results have been reviewed.  We are scheduled to return on Monday April 15^th.  At this point, we are unsure what type of immune deficiency Rylee has but we are hoping to find out.  The ID specialist told us that he was sure he’d figure it out, but that it may take a few months.  It seems that some children lose IgG from gastrointestinal issues, but we’re certain Rylee doesn’t.  He also stated that sometimes children produce enough IgG, but with the high demand of it in their body from recurrent infections, they can’t keep up the supply.  Other children just don’t produce enough.  We are thinking Rylee falls into one of the two last categories.

The ultimate goal is to cut down on the number of infections and the severity of them.  There is a chance that Rylee may need IgG replacement therapy.  It can be done through IV (IVIG) or subcutaneously.  IVIG is usually given once a month, in a hospital.  About 50% of children who receive IVIG suffer with adverse reactions such as fever, headache, nausea, fatigue or chills.  Subcutaneously, shots need to be given once a week.  There is less adverse reactions and it can be done at home, rather than in a hospital.  We’ll discuss further if Rylee needs IgG replacement therapy after the results of her latest blood work have been reviewed.

Rylee continues to cough like an 80 year old with emphysema, but after speaking with her doctor, she expects the cough to linger a few weeks more.  This past week, we are completely off antibiotics, Rylee already sounds congested.  We are hoping she isn’t coming down with a cold or something else as we have a full few weeks ahead.  The only thing we can do at this point, is continue nebs and vest therapy and hope it keeps the lungs clear.