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June Update

As you have guessed, the summer has been going well.  No news is good news.  There are a few things worth noting of course.  Zachary is doing well on his BiPAP machine at night.  As a refresher course for those who are interested... a BiPAP gives 2 levels of pressure, one for exhaling and one for inhaling.  The CPAP that Zach used to use at night was one continuous pressure
Zach has PT a few times a week, and he's increasing his endurance.  He takes walks around the yard, walks instead of using the wheelchair when we are out & about, and does not get short of breath.  

Zachary had his follow up appointment with the surgeon for his fistula.  The ultrasound of his lower arms shows that the transplanted vein is growing, but it is not big enough for access yet for dialysis.  It needs to be a few millimeters larger.  He has another appointment mid-July for another ultrasound.  In the mean time, we will continue to access his dialysis line.  Treatments at home have been going well, and we are able to keep Zachary's weight where it needs to be.  His blood pressures have been doing great, and his meds have been adjusted.  He used to take one BP med 2 times a day and another one just in the morning.  Now they are all dropped, but we take his BP in the morning.  If it's over a certain number, then Zach gets one of the meds.  For the most part, he doesn't even need that as needed BP med. 

After discharge Zachary was put on 2 antibiotics for a long course.  He was getting bad nausea from them, and they were stopped early.  All of the cultures were negative.  

Last week, there was a care conference at Children's Hospital in Milwaukee to determine if Zachary was a candidate for a kidney transplant.  (David & I did not need to attend) This is something that Zachary has been asking about and has been wanting really badly.  Unfortunately, he is not a candidate for several reasons.  1.  There is always a chance of rejection.  2.  A transplanted kidney cannot regulate itself.  That means that the kidney needs to be over hydrated, flooded.  Well, we know that Zachary can't handle any fluid overload.  It puts him in the ICU with shortness of breath.  3.  During the hospitalization for the transplant & healing, Zachary's mental status would deteriorate.  He would have to have a breathing tube put it.    4.  With the whole process, Zach would most likely experience suffering.  5.  He may not make it through the procedure.  Bottom line-No kidney transplant.  With dialysis, Zachary is not suffering, and he is able to receive treatments at home. With all that being said, Zachary was very, very disappointed.
We are very thankful for a non-eventful summer with R&R.  We have been to several graduation parties, and we congratulate all the young men & women.  Zachary continues to amaze us all with his strength & determination.  We are also very thankful for all of your love, prayers & support!  Have a great weekend!