Gage Update - October 29th

Over the last few weeks before Sunday, Gage has been showing classic signs of heart failure.  He has been cold, tired, no appetite, complaining of his stomach hurting, each time he does eat and only tolerating walking.  He was vomiting 1-2 times a week and was very pale.  I was very worried about him, so I called California on Wednesday last week.  They were concerned as well, and asked us to draw some labs.  The labs came back showing that his heart failure levels were climbing.  We redrew on Friday and they asked that we have him seen this week. 

So, to make a long story short, Gage and I drove down yesterday and he had clinic today.  On Sunday, Gage started acting better and has continued to act better throughout the week.  He has been eating more and has not complained of stomach pain or vomited.  With that being said, he had an echo, EKG, pacemaker/defibrillator check and an exercise study done today.  The exercise study is where they have him walk in between 2 cones for 6 minutes and they see how well he tolerates it.  He did pretty well on that test, he was able to walk the full 6 minutes.  His pace slowed a little about half way through, but he was able to do it.  His pacemaker/defibrillator check showed that he had to short episodes of v-Tach (quick heart beats) that only lasted for 7 beats.  These are short and don't do anything to him, however, they are getting more frequent.  His EKG was fine.  His echo showed that his heart was more dilated (enlarged) and the squeeze was weaker.  Usually they don't treat for a changed echo, but Gage is starting to show symptoms with the change in his echo. His liver was enlarged which is a sign of fluid overload and heart failure.

With these findings, they decided to admit him and give him some IV lasix to start pulling off some of the fluid.  They want him really dry.  If he tolerates this well, then they will look at making a med adjustment and possibly letting us go home.  While we are in the hospital, they are going to evaluate him for transplant and decide if now is the time to list him while he is still "feeling relatively good."  If they do list him,  they will list him as a status 2 and we will be able to wait at home.  If his symptoms return to how he was last week, they will admit him and start him on milranone.  Then, all bets of going home are off.  His size is a little bit too small to be able to do the new "heartware" assist device.  With this device, the kids are able to go out of the hospital and wait close by or at their homes if they live close.  Thus,  Gage's only option will be the Berlin that Lindsey was on, which means another stay in the hospital.  Jason summed it up well when he said, "So lasix, then milranone, then Berlin."  That is what we are looking at.  We are hoping to possibly go home and at least get through the holidays.  Not sure that will happen, but maybe at least, Thanksgiving.