Christian Nicholas Collins

Family Swimmers in Sunny FL

We will update here on health issues, hoping not to have many.

Mom is using Facebook a lot too, and you can always email us sylviadenise@cox.net

Family pictures at www.thecollinscrew.shutterfly.com

Journal

Monday, April 13, 2009 5:45pm

Christian News! Seems like a lot of it.

First, he’s sick, and has been dealing with something for a couple of months now. His WBC is 3.4, hemoglobin 14.4, platelets 758,000. So, that’s typical for a sick kid low wbc and high platelets. When Christian had the leukemia, his platelets were extremely low. He’s been on a couple of antibotics and started another one today. He has pneumonia/bronchitis type stuff in his lungs. Yuck. So, for those that totally don’t understand, no leukemia worries right now.

He had his CT scan done and it’s a year later. The scan is definitely weird. The middle part of his body is better showing no spots, gone from his liver. His lungs show new consolidation and airspace disease in his upper left lobe and azygous lobe. A spot on his right lung measures bigger, but could just be scar tissue. There are multiple new inguinal nodes. These could just be general sickness collecting here. Not really nodes related to the previous illness.

So, after talking with our oncologist, it seems that it is probable that it is not the same thing spreading, but a lung disease. Pneumonia, maybe not bacterial, but a viral? Wondering if Christian is aspirating food or drink into his lungs. Won’t that be fun to figure out.

Here’s his biggie for now. Sleep study results. His dx is Severe Obstructive Sleep Apnea with Sleep disturbance; hypercapnia ( high co2 levels); desaturation (low o2 levels, hypoxia); hypoxemia (low o2 levels). I missed the numbers and don’t have a copy, but something like 38-42 co2 less than 90% about 3% of the time. The ENT actually hasn’t given me the results, but I got them from the hemoc dr. That follow up will be in a couple more weeks, and we will get the recommendations, something like removing his tonsils and adenoids, etc, etc, CPAC machine maybe. Hmmmm, that won’t be fun.

I’m not crazy!
I’ve been thinking Christian is getting harder and harder to deal with and wondering really, does this behavior come with Down syndrome or does he have something like ADD or ADHD too. It’s been very hard to handle, and now we know he is extremely sleep deprived, but we haven’t know it. He doesn’t take naps, and just goes full blast all day, and the behavior is crazy at times.

For now, he will take his meds, follow up with hemoc in about two weeks instead of 6; schedule another CT scan in four weeks; watch his lungs and illness; follow up with ENT in 2 weeks. He will go back to the eye dr in June. He has just started Speech and OT 2x weekly and PT 1x.

We will happily take prayers for him and say one for mom, too. I have had about all I can take right now and am not taking care of myself as my dr would like. The other boys are sick right now with ear infections and bronchitis. First Communion for JP this month, Spencer’s bday, then Ashley and Shawn’s graduations in May. Can anyone say “June”.

Peace be with you all,
Denise

Links:

http://www.sylviadenise.blogspot.com   Family news and blog
http://www.thecollinscrew.shutterfly.com   Family pics
  

E-mail Author: sylviadenise@cox.net

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