We are home! After nine days at MDA, they finally let us go home late yesterday afternoon! Thank you, Jesus!
On Monday, they put a permanent drain directly into Rex’s abdomen to drain fluid as it builds up (which it does quickly). It is an easy process for us at home as we just turn on the “tap” every other day to drain between 500-1000cc’s of fluid. It brings him a lot of relief from the bloating and pain associated with it. Anything we can do to help him be more comfortable is a huge blessing!
Rex is still at high risk for blood clots, so they started him back on blood thinners after his labs became more stable. It is still a shot once per day, but half the dosage. We will definitely be keeping a close eye on how he does with it and look for any signs of bleeding (internal and external).
He is extremely tired and sleeps quite a bit. His weight has somewhat stabilized in the 140sand he is very frail. He is still jaundiced, but the itchy skin has subsided. He is eating again, mostly sweet potatoes and cottage cheese. Those seem to work well without causing too much pain, although he is never pain-free. On a scale of 1-10, his pain is typically around a five.
When speaking with Dr. Wolff yesterday, he told us that as long as we can manage the pain orally to an acceptable level and not have to go through an IV, we will be fine at home and not need to go into palliative or hospice care for now. He also said that Rex would probably not be able to physically manage coming into his office anymore, but since we live only a few blocks away, he would come to our apartment to see Rex. How amazing is that?! Rex and Dr. Wolff have developed a special relationship throughout this process. And he has been an enormous blessing to us both. We are so glad we chose an apartment so close to MD Anderson. It gives us such added peace knowing we are just down the street from a medical team that will take incredible care of him.
That is where we are at the moment. We are very thankful to be home and pray things go well. Rex is still mentally sharp and his jokes have gotten even better (I know, it’s hard to believe)! He still has that twinkle in his eyes, and God’s light continues to shine ever so brightly through him. We are blessed and thankful for each and every new day!
This afternoon Rex received a call from Mike Matheny. If you don’t follow the St. Louis Cardinals, Mike was their manager for several years and is currently the coach of the Kansas City Royals. He is a strong man of faith, and he and Rex have a special bond. They chatted, and Mike prayed for Rex. It was such a blessing. Below is a picture of the two of them in the dugout just before a game back in July 2012.
Thank you all for your continued prayers and support!
We love you all!
God is good!
