As much as the Type A in me wants to be all organized, this post will be somewhat all over the place...
June 13 --- Pierce's first appointment with Dr. Levine at Children's Hospital (New Orleans). I was very impressed and equally as happy to have him on our team of doctors. He seems extremely knowledgeable. I really liked when he said if he feels strongly that Pierce's health is going in X direction, he will let us know so that we can make an informed decision in a non-stressful environment (vs landing in the ER, being admitted and having to make a big decision for his health). Pierce's lungs looked good - no evidence of any lung disease. He gave us a prescription for Xopenex to use prn for wheezing episodes/night-time coughing. We follow-up with him in September - aka "lung season" - and if we ever feel as though a visit is warranted, his doors are open. He also wanted Pierce to undergo another modified barium swallow study due to choking and aspirating episodes. We scheduled a GI appointment with Dr. Keith at Children's for late July. {{After I typed this, I felt as though I've previously blogged about this but I can't remember}}
June 24 --- Pierce's 18 month well-visit; he was finally put on antibiotics - 12 days of Omnicef. His sinus infection started to clear up and magically his choking episodes started going away --- my mommy brain is telling me it's not truly a mechanical issue. I think it's either (a) his adenoids are/were swollen or (b) when he's sick he becomes weak (normal for anyone) but maybe it's affecting his suck/swallow/breathe function. I plan on discussing my theories with Dr. Keith.
June 28 --- Pierce received the Pneumovax23 Valent vaccine; Brice saw the same immunologist. We discussed his history and his previous immunology visit in September 2009. Brice had bloodwork to look at his immunoglobulin levels and titers. Brice also received the Pneumovax23 Valent vaccine.
July 5-8 --- Pierce started with fever the day after he completed a 12-day course of Omnicef
July 11 --- Pierce started with fever (again)
July 13 --- Pierce's fever climbed to over 104 with Motrin and Tylenol rotation getting it into the 103s. His heart rate was in the 140-150s and his respiratory rate was in the low 60s. We spoke with the pediatrician on call and she suggested that we take him into the ER given his medical history of mito diseaseand possible hypogammaglobulinemia. So off to Children's we went... 4 hours later + 1 chest x-ray + blood cultures = possibly something bacterial starting to occur but most likely viral
July 15 --- (today) Pierce STILL has fever. I spoke with his immunologist and she suggested that we go into the pedi to rule out strep and ear infections. Either way, she wants him on a 3 week course of antibiotics. She mentioned that it looks like he will ultimately end up needing IVIG therapy. We really won't know more until early September. Both the boys have repeat bloodwork to check their titers on August 23. It takes approximately 2 weeks to receive those results back. And speaking of titers, I received Brice's pneumococcal titers back today... {drum roll please}
So it appears as though both of my children do not respond to protein-conjugated vaccines. Fingers crossed that their immune systems will mount a lovely response to Pneumovax23. Come on August 23... and more importantly, come on 2 weeks post August 23.
I really just want answers. If one or both need IVIG therapy, I just want to get to that point. I just want something concrete... something that doesn't involve such lengthy wait times.
That's all for now because Pierce has a doctor appointment in about an hour...
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