Part of Anthony's lung issue--part 1

I'll explain in a later post about what we've learned since I posted this information on FaceBook in September.

Anthony's cardiology appointment was today, regarding his low oxygen levels in Colorado at a high altitude.  It was fascinating!  I get to play detective, and do a timeline of when he had pneumonia and when they discovered the hernia that made a kidney go in his chest, and when our Make-A-Wish trip was.  All these things interplay, causing a ripe situation for low oxygen at a high altitude.  I just hope he does not get the enterovirus that is going aroundt this year.  He would get really really sick with that.  As long as he does not get really really sick, this is all really fascinating.




Ok, so I just did a quick search of the blog and did the rough timeline the cardiologist and I talked about.

Anthony had pneumonia when he was diagnosed with leukemia in Dec. 2009.  He developed pneumonia, RSV, and parainfluenza in March 2011.  Life-threatening port infection in May 2011, when a hernia was discovered in his belly, which made way for part of his bowel and a kidney to be in his chest!?!  Our Make a Wish trip was in July 2011.

Anthony did not have any problems on the airplane to Florida.  This means that his previous infections and illnesses were not likely the cause of his low oxygen in Colorado.

His cardiologist has practiced for decades, with most of that time in Colorado.  He has experience with Anthony's specific heart defect, in patients with and without Down syndrome.  He is confident it is not the reason for Anthony's low oxygen at high altitude either.

So, now I need to research futher infections Anthony had since 2011, to see if they may be possible causes of his decreased lung capacity.

We could see a pulmonologist to measure Anthony's lung capacity, but that information (although it would be fascinating!) would not be anything we could act on.  It is likely that the kidney and bowel in his chest has affected Anthony's lung capacity by 10-15%.

For now though, we need to eventually get an oxygen concentrator for when we do travel to Utah, Idaho, or in an airplane.  Anywhere with higher altitude than where we're at now.