Wayne was progressing along, things are looking good………HOLD ON THERE!!! TOO MUCH TOO FAST!!! Everything I have read and is said repeatedly by the staff is, s-l-o-w baby steps and they are not KIDDING!! Something upset the tummy. How do we know? First the “tummy aches” then the diarrhea comes and keeps coming. STOP!! We have to STOP this FAST!!! ECP changed back to twice a week, tube feeding stopped, in fact all feeding was stopped for 48 hours, and sadly, holding off additional weaning from the steroids. A change in one of those variables was one too many. The good news after only 6 days ……. things are back to normal. Well…. almost normal. Most important, the diarrhea has stopped. The bad news……He now has to eat all his calories, all 1,000 calories per day. This is actually hard to do when there are only about 10 things he can have, and the best option is jello, sugarless of course. He is determined, we are determined, to make 10 choices into 100. Let’s hope that it is enough to appease the GvHD. Then he can start back on eating food that is good. Oh, who I am kidding? It may not be good but at least it will be better. Better, getting better is what we are aiming for and then we’ll see who pulled a fast one.
Wayne can stand. With help, but he can stand. The secret is good body alignment. He must stand straight and tall. If he looks down to see his feet, which is really tempting, he’ll collapse. Let’s face it, who wouldn’t be tempted to look down and see that they are really standing on their feet. And of course, wouldn’t you want to check out where those feet are taking you? Tempting indeed! Your bones are like individual dominoes building on top of each other, the shins over the ankles, the knees over the arches, the pelvis over the feet, the rib cage suspending over the pelvis, and the head floating above the rib cage. There is a plumb line that connects through the center of your head to your tailbone and heels in your standing posture. Inner alignment is centered in the bones. When you place your weight into your bones, the muscles hold less tension. This is the dynamic of standing alignment. When you stand in alignment, the body can be at ease, and uses less muscle, which currently Wayne is in short supply of. Wayne can stay upright with a minimum of physical effort when his focus is on aligning his bones, he is “standing on his bones.” What happens when Wayne sticks his butt out or turns his head or moves his arm out in from of him, you guessed it, just like dominos, he falls down! He must hear the loud chant coming from all of you “Keep your head up Wayne, it just makes plumb good sense.”
Now comes the hard work. He is entering intense training. The medical pieces or components of his care are being managed, ongoing, but managed. AND Yes, I am keeping my fingers crossed, have my rabbits foot, and am down on my knees hoping and praying that this continues. So NOW, the majority of the work is on his shoulders. He has a lot of help (all of you of course) and the Physical Therapy department, but he has to do the work.
Most of us know what developmental milestones are, especially if we’ve had children in our lives. Developmental milestones are used to measure how an infant is progressing, developing and using skills to reach the goal of “independence” to be able to sustain and care for one-self. “How does this pertain to Wayne?” For a person who has lost muscle, muscle control, and strength, you start at the beginning, as if you were an infant. It is important to determine what a person can do, in order to help them begin to gain their independence. Luckily, Wayne knows what he has to do, and understands what what happens when he can make movement possible, now it is just developing, and strengthening muscles to just be able to do it. All Wayne’s efforts are now aimed at gaining those skills. For example, Wayne is working on being able to “sit” on his own. Oh, I hear you out there, “what can be so hard about sitting around?” First of all you have to be able to pull yourself to a sitting position (Wayne is not quite there yet), then you have to sustain yourself in that position without falling from one side or the other. Do you know how hard this can be without your “core” muscles, no easy feat!! Just like an infant that hasn’t developed important trunk control, you must position Wayne so he does’t slid out of the chair. He has a lot of ” growing up” to do. And just like proud parents, we will be beaming as he reaches each milestone.
I know many of you out there who have first hand knowledge and are well versed in what that means. Yes, he is back to having his “metamucil cocktail”.…he must be improving. He used to take it to help him “go” this time he is taking so he doesn’t “go” so much. Whatever, it is amazing but it just like comfort food.
Just think, a week ago Wayne was transitioning out of ICU. Amazing, what could be better? Yes, I hear you say… “HOME” and he is working hard to that reach that goal. All good work should be rewarded and it seems that Wayne is receiving the fringe benefits of a short stay in ICU. Who would think that going to ICU could have such positive outcomes? Of course, he should get some benefit from giving us the scare of a lifetime and for all your hard work, positive thoughts and prayers.
Fringe benefits that came as a result of his ICU stay: (answers to “how can this be?” found above) 1. Fluid restriction lifted along with diuretics being held. And can you believe this – no additional edema. He is still “puffy” but in spite of being fragile, his kidneys are working. Prior to his ICU excursion he was getting diuretics twice a day to reduce all the edema and going potty CONSTANTLY! Wayne’s body is now being put to the test of doing the work of getting rid of the fluid and seems to be up to the task. 2. IgE antibody hemolysis slowing. Because Wayne was in ICU, the medication Rituximab, given to destroy the arrant antibodies that are destroying his RBC’s was held. And it is still being held. We are hoping this is an indication that his naughty immune system is behaving better and most importantly the GvHD did not flare up. Now at night he will not be starring at you with his yellow eyes, creepy! 3. Best of all.. Steroid reduction – big time!!! The first thing that his doctors did when they suspected pneumonia was to reduce the steroids -A LOT. And they are continuing an accelerated taper. His current dose is 30 mg of prednisone, can you believe it! A drastic measure, in the eyes of the physicians, but worth the risk. Why take away such a critical drug for the management of all of the complications Wayne has developed? His body was so weak from all the steroids it was more important to give him a break, let him build some strength and then deal with the consequences of decreasing the steroids. Of course the big risk is the dreaded GvHD. So far, so good, GvHD did not flare up. Is this another indication that his naughty immune system is behaving better –what a break that would be! 4. Holding off Neupogen. This medication is given to treat his severe neutropenia (WBC count below 500). Neupogen stimulates the growth of white blood cells. For now, it appears that his bone marrow is recovering from the GvHD along with earlier infections and is slowly beginning to produce WBC’s on it’s own. He still needs blood products and has a way to go but at least he is not severely neutropenic. 5. Oxygen, now, only through the night. One of the complications of pneumonia is the fluid accumulation in the lung and surrounding the lungs. This fluid increases the work load Wayne has of breathing. He can NOW do the work on his own during the day but by bedtime he is plum tuckered out. You can easily imagine how tiring this would be if you think of the fatigue and trouble you have breathing when you only catch a cold. Just imagine if you didn’t have good strong muscles to do this work. 6. No septic response!!!! This really is amazing, especially as he just recovered from a bout of sepsis, which frequently puts the person at an increase risk for developing sepsis again. 7. Pressure sore on behind, showing great signs of healing and he is able to sit more comfortably. He really could use a “booty!” That really would be some FRINGE BENEFIT!!
Mystery, “chimeras”. After reading other books written by author Camilla Lackberg, I stumbled across this one, imagine my surprise. I want to share this “who-done-it”, even though we knew right away who did it. Still, a quick and easy read, it makes for interesting reading and a story line that will undoubtably be used many times to come. Happy reading!You may recall that on day +100 post transplant (he is now +day 192) Wayne had 100% chimerism.
Right now Wayne is what you might say, “a little on the skinny side”. Wayne needs to be much more. It doesn’t seem likely he will be much more eating a measly 300-500 calories a day. The goal for him is to eat a minimum of 2,000 calories a day (I provide a good example of what he must do. I tell him, “do as I do”, but alas I am doing all the eating, well over 2,000 calories and he is not!!!!) Since we cannot shove food down his throat, we can do the next best thing and tube it down his throat. Even with the nasogastric tube (a tube that goes from the nose to the stomach) he will still need to eat and drink, which he can easily do with the tube. Wayne will now receive much more help, calories and protein and soon he will be much more than what he eats, he will be a strong, muscular dude. Bon appetit!
Do I need to say more? He has 9 days left of antibiotics, but he is doing so much better (the fluid in both right and left lower lobes of lungs should slowly reabsorb into the vascular system). He has been moved back downstairs to the BMT unit. Yes sir, the wheels keep rollin’ I tell you all, this time the feelin’ sure is fine. Just move Wayne on down the line.