Heart failure and a 1A status

What a week!! Whenever I feel like things can't possibly get worse, they do! I'm exhausted so I'm going to write a quick update. Last Tuesday we were scheduled to get a chemotherapy infusion. We had done labs in the morning and were waiting in Oncology's infusion center when Dr E came in to review the labs. Although Matthew had been seen by cardiology twice the previous week, Dr E had not seen him for ten days so she wanted to check in on him real quick. She took one look at him and said "He's not getting his infusion today!" She ordered an echo and an ECG and started his paperwork for a direct admission to the CICU. Matthew's echo looked fine, but once we got to the ICU his heart looked huge on chest X-ray and his lungs showed pulmonary edema. They started Matthew on a milrinone drip and watched him in the CICU for three days. Now we are on the floor. Matthew got a PICC line placed and we are hoping to get out of prison soon. Matthew's hemoglobin and hematocrit have been low and his BNP is really high. Matthew's limbs have been "hot" and he feels like "needles" are stuck in his fingers. As it turns out, he's having a lot of non-specific and very specific pain related to peripheral neuropathy which he developed as a side effect from the Bordezomib. It was a known risk, but we really had no other choice in order for us to get on top of Matthew's rejection. I hope and pray that this is something that will go away!!! He is now on neurontin (a seizure medication- why not? That makes the grand daily med total for Matthew 13!!!) We still have some issues to work out before being discharged, but our goal is to get Matthew home on 24/7 milrinone. The bad news....Matthew is in heart failure. The good news....Matthew's heart transplant status has been changed to a 1A from a 2.
My head is still reeling. I think I may be in a little shock. Things in the "heart" world always happen much differently than expected.
Thank you all for your love and support. We could NEVER do this without you!! Our ward and neighbors have been awesome! My parents and Matt's parents have been helping non stop. We have been blessed and we are grateful!!