Not the News We Were Wanting to Hear With Gage

Gage had his 6 month routine clinic visit.  He hadn't been seen since February.  At the end of May we had his pacemaker checked since he was here with Sierra.  This is where they put a monitor over his pacemaker and read the events of his pacemaker over the last 3 months or so.  When they did this in May, everything looked great.  His battery still had a couple more years on it.  They checked his pace maker again this check up and found that on June 4, at 12:30 am he had a 17 beat of V-tach.  This is where the heart isn't really beating, it is just spasming ( that is the best I can describe it).  He then had another episode 2 days later at 1:00 am, but for only 7 beats.  This gets the doctors all worked up.  For one thing, it is showing that his heart is getting worse.  Another is, if his heart goes into a v-tach episode and it doesn't come out, he could have a heart attack.  Both of these episodes have happened while he was sleeping.  There would be no way for us to pick up on it.  His pace maker is meant to help pace the heart, making sure that the ventricles and atrium's are pumping in the rhythm that they should.  So, it does not help the v-tach episodes.

Wednesday morning (as Jason, Gage, Hunter, and Mean were passing through Winnamucca) I received a call from the nurse practitioner with Gage's lab results.  They drew some labs on Tuesday after his clinic.  I thought it was just to check his kidneys, since he is on diuretics.  Apparently they added others.  One they drew told them that Gage was not getting the nutrition his body needs (not a surprise there), we are constantly forcing him to eat.  Sometimes he eats well, other times it is a losing battle.  The other test they drew, for the first time, is a newer test and tells the doctors how much heart failure the person is in.  Normal for this would be in the 300 range.  Gage's numbers came out at over 3,000.  They don't know where Gage's baseline is, as this is the first time they ran this test.  Not results you want to hear, this is definitely not the highest number they've seen, but not a number they like to see.  The NP ended the conversation wondering if Gage and Jason were still here because Dr. Rosenthal would like to meet with us.  I don't think he wanted to invite us over for a BBQ.  Usually when he meets with us the news is not good.

Yesterday Dr. Rosenthal called both Jason and I separately, very nice of him.  He told us that they would like to place an internal defibrillator into Gage.  This device would "shock" his heart out of the V-tach episode.  Gages heart is getting worse.  It has maybe 18 months to 3 years at the most before he will need a transplant.  This procedure will hopefully buy a little more time.  Those were Dr. Rosenthals rough estimates of time.  So, Gage and Jason will return when we have the surgery date.  We are wanting it soon so that Sierra and I can still return home on the 19th of August.  This is usually a pretty quick procedure, He will recover for 2-3 days in the hospital and then they will want him close for a couple days after to make sure the wound is healing.

Sierra is in biopsy right now.  She has been feeling better, the bladder infection seems to be resolving.  However, she has steroid induced diabetes.  Her blood sugars have been really high.  The doctors say this happens in 30% of cases of patients on Prograf and Prednisone.  Most resolve as you wean them off the prednisone few don't resolve.  Monday Sierra goes to the endocrinologist to start education on insulin, checking blood sugars, and diet for diabetics.  I told her this will be good education and experience for her, as she wants to be a nurse.

I write this update with that sick pit in my stomach that comes with a visit from Dr. Rosenthal.  I love that man and  all he does for our family, but multiple times he has been the one to deliver the "blow." Sometimes I feel like we are in a lake swimming, we start getting tired from treading water, so we start swimming to the shore.  Just as we get close, we get pulled back with a rope that is around our waist, to the middle of the lake.  We have to start working our way back.  I know we will get through this, we always do.  Someday we will reach that shore again, but for now we will keep treading water.  We will take all prayers offered in our behalf.  If you want to know specifics, please pray that Sierra's diabetes will resolve as she is weaned off the steroids.  Pray that Gage will do well on the defibrillator and that his heart will last him a little longer.  Thank you for all your love and support.  Sorry this is such a long update, but a lot has happened over the last couple days.

 Gage with a monitor on to record his heart activity for the next 14 days.  He is not excited.

On a much needed positive note, Sierra's young women class from home came to see us here in CA.  Very nice of them.  We were able to spend the day with them at Santa Cruz Boardwalk yesterday.  A lot of fun!!