April 24th - "The Roller Coaster in Iowa"

April 24^th – “The roller coaster in Iowa”

This will be an update about the happenings of the last week and let us say there is never a dull moment. Last Wednesday morning we got a call to come in for a standby possible transplant – yes we thought we were at the top, but this list is a “fluid” one in that at any point in time someone with a higher meld score can move past you. So we waited most of the day and it turned out to be another “no-go!” Since he was already in the hospital they went ahead and did another paracentesis and 13 pounds were tapped off!

Now fast forward to Saturday evening, the 20^th, and we got another call that Charlie was the PRIMARY one and that they were not even getting a backup. So we were a little stunned, got the last items placed in the bag that stands ready, and headed to the hospital! The staff got all the things done that are pre-op protocols to get a person ready for a transplant and then we spent the night trying unsuccessfully to sleep! Surgery was scheduled to start at 8 on Sunday morning. Right before 8 the call came that transport was coming from surgery to get him – wow, this was really going to happen and the tears started flowing! We have spent so much time in the transplant unit that it was like a family gathering sending Charlie and I off.

We said our “see you later” etc. and I got settled in the waiting room. Then “all” started going downhill fast! I got a call from the surgeon to let me know that they were having some difficulty getting Charlie’s heart rate and blood pressure stabilized under anesthesia. He said that he would let me know shortly the latest. A little later he came out saying they could not get him stabilized and that I would need to make a decision on whether they should try to continue surgery considering it would be very risky and that he would be back out shortly! Well, needless to say, I was stunned and did not know what to do. Fortunately, the decision was not one that I had to make as he came back out and said that the decision had been made - they all had said STOP! Fortunately, no incision had been made, but he did have all “lines” in ready for action.

All I could do was cry – fortunately, Meg arrived soon after and Doug later that afternoon. We had all hit rock bottom! A couple of days out now we can see how fortunate Charlie was, because the doctors said that he would not have made it through surgery!

The whole team now is trying to figure out exactly what happened – they first thought it was severe aortic stenosis and ran all sorts of heart scans, etc. and, on Tuesday, Charlie had an angiogram. This showed that nothing had changed from the previous known moderate aortic stenosis. The cardiac surgeon said that there was nothing on any of the many tests performed over the last 2 days that would indicate that what happened in the operating room should have happened!!

The plan now is for the cardiac surgeon to meet with the anesthesiologist to hear exactly what happened in the OR and  Charlie is scheduled for a stress test May 1^st. Following this,  the whole team will meet to decide what happens next – hopefully, they will get Charlie back on the active transplant list which is the goal!

We came home last night after Charlie having another paracentesis  - we were all making bets on how much fluid would be tapped off! Charlie actually was the closest – 15.4 pounds!

What an absolute roller coaster of emotions we have been going through!  The kids are back home and now to get Charlie rested up from this whole ordeal. Today he has been absolutely exhausted!  We would so appreciate your prayers that the team can figure out exactly what caused the heart situation and that Charlie will be back on the list ASAP!