Wayne is grounded. Currently Wayne is taking 2 immunosuppression medications as well as a steroid so he is definitely grounded – which is the same thing as category B. Below is the “can do” list or is that the “can not” list.
Some of you out there have actually seen the phenomenon of “a chicken running around with it’s head cut off” so you would be able to confirm that, for the days prior to Wayne’s discharge and return home, if you had stopped by my house you would have seen what looked like “a chicken running around with her head cut off.” An explanation is in order. There was much rejoicing when we learned that Wayne’s progress was moving ahead of schedule. This also means a shorter period of hospitalization than had been originally forecast. How great is that!… Oh but wait, he is coming home soon. Yikes, Oh my, uh-oh! I needed to get busy. BMT patients must be discharged to a home that is “deep cleaned.” Believe me I was in deep and had to clean my way out of the mess we had. Besides deep cleaning everything, I needed to get rid of all live plants, clean all the appliances, clean the vents, replace filters on anything that had a filter and have the carpets cleaned. Yah this sounds like a pity party but I have been asked by many what do I have to do before he comes home. So to borrow a line from the musical Annie “Cleaning ’till it shines like the top of the Chrysler Building.”
Rollin Rollin Rollin Though the legs are swollen Keep that Wayne a rollin Outside
All the things I’m missing Good vittles love and kissing (after 100 days) Are waiting at the end of my ride
I guess by now you have figured out from the song that we are headed home. “Count ’em out , ride ’em in” – Of course the count! Twenty three days, 23 days and we are headed home. Look how all your prayers, positive thoughts and energy has paid off. Wayne has worked so hard to come home, he has shaved off almost 17 days from his predicted hospitalization time. Let’s keep hoping that it continues through the next 77 days.
…… and lots of prayers and support. It is paying off in helping to speed this process along. I hope we have not neglected to thank you all – it is the very best medicine.
His mouth sores are gone, his nausea is manageable. He is now eating on his own, taking his medications by mouth, no more IV medications. His blood levels are improving (ANC-3100!!) It has been 3 days since I have seen him last. He has lost 30 pounds of fluid, 10 pounds each day, and looks so much better! When a person holds that much fluid it can cause extensive bruising where the fluid pools and is more dependent. So his backside is all red and blue. He still has a bit more fluid to go, still can’t put on shoes – thank goodness for the old faithful slippers. He is still receiving Lasix by injections to help get rid of the excess fluid. He is weaning off steroids, no sign of the dreaded graft vs. host disease. The bottom line- he is doing remarkable and is ahead of the timeline given – who knows he could be home in time to watch the Utah vs. BYU game. I better get cracking to get the place ready!!!
Wayne is doing so well that when he is not getting his liquid dinner (TPN), and the few medications he is not able to take by mouth,he is has been able to leave the IV pole behind. Wayne has a Hickman line, 3 lines that go into one vein, and each line can each be capped off until use. Pretty neat! Yes this means he is doing better everyday and now he has lost 17 pounds of fluid. Just imagine the trips to the loo.
You know that look. You know the answer, but you ask or do it anyway. You say to yourself “it doesn’t hurt to ask, you never know unless you ask, what if….” And then comes the look. The shake of the head, or the raised eyebrow, the movement around the mouth, the outright guffaw, or the outburst “are you out of your mind,” which of course all mean the same thing, “You didn’t just ask that did you, really?” That is the look Wayne got from the doctors today. I awoke with a runny nose, a bit of a sore throat and a rash on my arms. I didn’t feel sick and concluded allergies. On the drive to the hospital my daughter calls with the news that my granddaughter has a cold. I mean, she was perfectly fine Friday and Saturday for that matter! I completely forgot about the visitors rule we were using, visitors need to wait 5 days after being around small children to visit Wayne. Children are like little petri dishes. I forgot! So today, when Wayne asked the question, he was given the look. Therefore, I have no facts but here say is, his numbers are climbing and he is losing fluids. The gossip on the street – he is doing great.
Of course there may be some of you out there who may not know or have even heard the lyrics to this song, (Wayne at least claims to have heard this) but this is the theme song for Wayne today. I promise not to make each day a theme song. I did take liberties and “tweek” it a bit, but I am pretty sure Mama Cass would be “down” with the changes (that pun was for Wayne’s dad):
“And believe it or not Now there’s something groovy and good ‘Bout whatever he’s got Growing stronger, starting to eat some food Getting better everyday, better everyday.”
Twenty-four little hours. . AND a lot of good wishes and prayers!!!! Wayne’s ANC is 900 – good, good, good. So he is producing those important neutrophils, his ES, engraftment syndrome, is resolving and he is still losing fluids. At one point Wayne had gained 30 pounds, the result of fluid retention. His nausea is more manageable and so they are starting to give him his immune suppression drugs orally. His skin biopsy came back and it does not look like he has signs of acute graft versus host disease. What a difference a day makes!