Wednesday, December 14, 2011

The craziness of wintertime


So, Abby has pnuemonia. So much for whatever I had being seemingly non-contagious. It seems that a potent, nasty virus has invaded this house, and we really, really hope it left after Abby. Whatever this is seems to camp out as a high fever and invade the lungs. Out of everything we have had the past few years, I am the most concerned about Nate getting this bug. We are supposed to leave for our long northern bound Christmas trip this Saturday, and I am really nervous about what may lie ahead for us. I really hate feeling like the other shoe is about to drop.
Abby is now on a good antibiotic and hopefully will break this stubborn fever soon. We are also doing regular chest percussions on the poor kiddo because her xray also showed atelectasis. Hopefully she will be back to good in no time. Although watching TV a lot more than usual is a blast, she is sad that she has missed out on this final last week of school before the Christmas break.
In an ironic twist, Nate had a regular follow-up appt with his pulmonologist today. We absolutely LOVE his pulmonologist, and although the little guy was a bit cranky from a lack of a nap during the visit, it was a good appt. It was also really great to finally meet the new chair of the department and talk extensively about all the weird ins and outs of mito with him. Like all the rest of our docs, he was great! I am always impressed with our doctors' inquisitive natures and zeal to learn about mito disorders, especially the ones here new to Nate (there literally aren't many we haven't seen at some point before), and therefore fairly newish to mito disorders...especially the disorders with Nathan's presentation. We left once again thankful for the amazing doctors employed by our children's hospital.We have such a great team here.
I also picked up some labs when I was there that the little guy had done last week. His lactate was normal once again, but his pyruvate continues to be quite high. I don't think Nate has had a normal pyruvate in all his life. His liver labs were elevated...in addition to him having some random issues with hypoglycemia lately, I am not surprised that his liver may be struggling a bit more lately. In conclusion, his IgG is once again low, and he seems to have lost most of his response to his pneumococcal vaccine once again.. Even though we know the little guy is struggling in different ways, it always seems to be more apparent when we get his labs back. But even amidst it all, the Nafey boy continues to do well. He's hanging in there...eating more than he has in quite a while and still quite energetic. These are times where I am glad that we look at the patient and not the lab work in regards of treatment. I really hope and pray that he can get through the wintertime without problems with illness that can quickly set him back.

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