Saturday, November 3, 2012


Tyler's surgery went well and he is back to his normal self.  We will find out in 3 months if the deflux injection procedure for his kidneys worked.  Until then, he is on his daily dose of amoxicillin to make sure he doesn't get any kidney infections.  The g-tube placement went well and he was just really sore for about a week.  Brian and I are relatively comfortable and learning the ins and outs of using the tube.  For instance, last night we learned that if Tyler is going #2 during a tube feeding we should clamp the tube to stop the feed and wait until he is finished. If you don't, he will vomit everything back up (which he did) resulting Ty and I both covered in puked up Pediasure (gross!).  So chalk that up to a lesson learned and onward we go.  We were excited to learn that he gained 6 ounces in the first week of having his tube in.  He is sleeping better and napping longer.  We are very pleased with the decision and confident we will continue to see the benefits of having it.  Right now, we are giving him a bottle (6 oz pedicure/1 oz water) every 4 hours and whatever portion of the bottle he doesn't drink goes directly into the g-tube.  Sometimes, this may be 4 or 5 ounces and sometimes he drinks the whole bottle-no tube needed.  It really is a load off.  We know without a doubt that he is getting enough calories, nutrition, and hydration.  I did get a call from his nephrologist about the high calcium issue that we have still not resolved or found a cause.  He has done all the testing he knows to do and referred us to a endocrinologist who has special interest in kiddos with chromosome abnormalities that have high calcium.  She wants to see us and they are working on coordinating her appt with one of the other Riley trips we already have scheduled over the next couple months.  Hopefully we can that resolved along with a good report about the kidney surgery and we will be in the clear.  Our next goal is to make it through the winter months without any hospitalizations. Go, Ty! Go!

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