The good, the bad, and the unimaginable

Cincinnati Museum Center

This past week was overall pretty good.  Aaron's sores look as though they may be healing.  The dressings use to get soiled and fall off several times a days.  They are no longer falling off.  Dr. Davies thinks the sores look like they may be less deep than before.  He still bleeds from his wounds and soils his clothes in blood at least once a day.  Overall, I think he might be getting better which is huge!!! 

Aaron's cataract surgery also went well.  Aaron could not see anything unless it was about an inch from his face before.  The high steroids over the years caused severe clouding of the lenses.  He had surgery in his right eye and now he can see much better.  We decorated his room and he can see the decorations.  We are also able to start doing his sight words again.  Aaron wanted to learn about the surgery.  After watching two videos on cataract surgery, he explained to the ophthalmologist exactly what he had done to Aaron's eye.  The ophthalmologist was pretty impressed. 

The not so good... Aaron's line broke at midnight Friday night.  He had a new line put in a couple of months ago and it has been terrible from day one.  Neither lumen flushes or draws very well at all.  The nurse was flushing the line and we heard a pop.  My heart stopped for a minute.  A broken line is not good.  It can be repaired one time and then he will have to have surgery for a whole new line again. Thankfully, at 2am, the line was repaired.

The best part of the week is Aaron.  He has had endless energy.  I took him to the museum again Saturday.  His favorite part of the train display was closed for renovations. He was forced to look at new things. At first, he was not happy. Then he asked to get out of the stroller and began exploring and walked for about forty five minutes up and down steep ramps. We then went back to the hospital. He did not want to get in bed. Rather, he insisted on standing up to eat his dinner and must have stood for another hour.

He has energy that I haven't seen in years. He had an NG tube put in a few weeks ago. The doctors wanted to give him peptamen jr formula. I said no.  He drinks Boost Breeze (juice version of Boost) all day long. I didn't see how more artificially derived substances would help. I worked with the nutritionist to find a formula derived from actual food.  We found Compleat containing chicken, peas, carrots, tomatoes, and cranberry juice. Prior to this his diet consisted of garlic bread, lactaid milk, boost breeze, and cupcakes and four bites a meal was a considered a success.   He gets Comlpeat four times a day.