Saturday, March 17, 2012
33 Days Ago. . .
33 days ago I walked along the stretcher that held my son as he was wheeled to the awaiting team in the Cardiac Intensive Care Unit at the Morgan Stanley Children's Hospital of New York. 33 days ago, I kissed his head and reassured him that he would most certainly NOT "pass away" while getting his long awaited heart transplant. 33 days ago I watched them return with my son, attached to more wires than I could count, more pumps than I could imagine and more blood running than I've ever seen in my life and with oxygen saturations of 100%. That 100% was the confirmation I needed that indeed, he did receive his new heart. His old one could never have gotten to that number.
Over the course of the next 20 days I stood next to his bed, watching, caring for and assisting Trayvon as he embarked upon the monumental recovery process in front of him. I cried as I watched the sulleness and depression set in, as he screamed through some very painful and scary medical procedures and as we left the safety net of the CICU to move to our new room on the regular floor.
We fought together to help him get up, walk, remove chest tubes, get blood taken, deal with severe diarrhea and to try and eat anything at all. My heart was aching that he was still so fragile, still feverish, still not well even after all I had tried to do. I turned him over to my loving husband for his 2 week stay.
While I was away, Tray was started on antibiotics. Peter began the painful process of getting him to move and walk despite the pain and fatigue. He was forced into eating or face a feeding tube. His line was mismanaged and clotted, causing undo stress and confusion. He had a cardiac cath, a CT scan and several x-rays.
Tray also responded better to Daddy's demands and he began to see that it DID feel better to move. His OT and PT started and he began to feel the benefits of eating again. His severe diarrhea started to clear up. His attitude improved and overall, he was better.
14 days later I returned from my 2 week break home to be greeted by a happy, walking, IV free, son who was now clearly realizing the true magnitude of his gift of life. He hugged, greeted and loved on everyone that came down today. He happily walked all over with his sister and brother and requested a Southwest Salad from McDonald's tonight. He looks, and feels so much better. He is still thin. His numbers are still off, but improving. He is ready to make the big move to the outside world. I am too.
We are awaiting the results of some special tests for rejection that they run after each catheterization. We should have those in by Wednesday and Ronald McDonald House has been notified of our impeding discharge on Wednesday. He is ready to go and walk to his new home away from home.
In the past 33 days, I've only been with my other kids for 14 days. While home,in an effort to not focus on the "what if's" here, I kept busy. I did more cleaning and repairs in those 2 weeks home than I think I have done in the past 2 years. I was sad that I didn't get more done, but have a running list of things to do on my next break home. LOL I spent valuable time with my other amazing kids. I did 2 heads of hair with umpteen braids on both. I talked with teachers, I went to doctor appointments, I filed papers and I completed paperwork that had backlogged.
33 days ago, I had no idea where we would be right now, and truthfully, I could never have imagined how good things would be. Over half way to home if all goes well. Imagine where the next 33 days will find us!!??