Keep ‘em coming

Michael continues to give 110% to his rehabilitation therapists.  In turn, they compliment his determination to push his physical limitations to the point of exhaustion.  Affecting his progress though, is his very swollen right knee.  Along with knee, his pelvis and femur were x-rayed last week with no signs of a fracture or break.  Michael feels the pain when pressure is applied toward or leg movement toward the hip.  After examination from the Doctor again today, an MRI was ordered.  The nurse scheduled the MRI but with staples in his head still intact, no MRI.  Dr. Gisofi asked the nurse to remove every other staple and says he’d check the incision tomorrow to see how it looked.

We are seeing more movement with his right hand and he is not tensing it as much as before.  He will take his left hand and striaghten out his right.  At times, he’ll move and wiggle the toes on his right foot but never his leg.  Over the weekend his Father asked him if he could feel his leg “yes”.  Can you move it?  “I’ve been trying to”

Speech is developing and is articulate but still sparatic.  Most movements are purposeful but there are a few movement tics that we see Mike working through.  Bicycle type movement of his left leg, crossing his left leg and foot over the right, moving his left foot in a tapping circular motion (which he always did when he was going to sleep), scratching his head where the bone flap incision staples itch and the newest and most pleasant, picking his nose.  You can see that he becomes aware of the non-puposeful movements and then tries to settle himself to stop.  Michael never liked inappropriate social behavior, so we know he’ll work hard to stop picking his nose in front of people.  We must have humor people

Blood and urine samples were taken Saturday to check the UTI and staff infections that started at Fairfax Hospital.  We’re hoping to hear the results soon.  If the infections are gone, out comes the aggravating hand IV.

The feeding peg is still in and Michael continues to receive a nightime feeding.  The nutritionist will evaluate his diet this week and with the doctor, make a determination to keep or remove the peg.  If he’s getting and maintaining enough calories and nutrients, the peg will be removed.

At mealtime, once the food is on, he can hold the spoon or fork and with guidance take it to his mouth.  He chews and swallows perfectly.  Mike will pick up a cup on his own, take a drink and place the cup back on the tray.  If there is something on his mouth, he takes the napkin from the tray and wipes his mouth clean.  He will now let me floss his teeth without trying to chew my fingers.

Six days a week M-Sa, Mike’s therapy sessions are 9 or 10am, (lunch between 11:30-12:30) then therapy again at 1pm and 3pm.  So far it’s been Occupational first, Speech second and Physical therapy last.  They all wipe him out so it’s vitally important that he rest well in between.  Thank you for waiting until after 5 to visit.  Thank you for keeping your visits short and thank you for caring enough to understand the importance.

We love you all and cannot thank you enough for your prayers and well wishes.  Keep ‘em coming.  Without your love and support, none of us including Michael, would be able to make it through.  It truly takes a village.

xxoo

A day with Michael

I was able to spend the entire day with Michael engaging in nurturing rituals like feeding, bathing and the basics of communication.  The intimacy a mother shares with her newborn child.   Grown children don’t realize what great value we place on those intimate moments.   How we long to duplicate those times when we share the same psychological space.  As they grow, it comes with sharing laughter, a moment of silliness or just talking about our daily lives.  How many times have I yearned for that intimacy again with Mike, fearing I would never see or feel it again.  Just to feel his emotion, to hear him speak, to see him smile, to hear him laugh.   Today, all senses are tapped.

I read to him Mitch Albom’s  “for one more day”.  A story that asks the question: what would you do if you could spend one more day with a lost loved one?  Considering how close we were to losing Michael, and how deeply we have all been affected, it seemed appropriate reading material.  Only 197 pages, we’re reading two chapters a day.  I feed him breakfast, lunch and dinner.  I wash his face, hands, feet and as much of his hair as allowed.  I try unsuccessfully to shave him.

For most of the day, Michael’s demeanor was calm and relaxed.  This afternoon however, I felt and understood his vunerability.  I saw that for now, he has lost his intuitive compass.  I could not discount his experience or the reality that in this most vunerable state, he must trust.  He must trust and assume that those around him will not harm.  That what is so, is so.  How heavy is that?

I couldn’t go with Mike to PT.  His knee is still very swollen and it is a source of intense pain.  I cannot watch him go through it.  I wait for his return.  After the hour, I walk toward the nurses station and see Mike sitting in his wheelchair.  I can see that he is not well.  The tech is holding him very tightly by the wrist, too tightly I think, his entire arm was red from her grip.  He is struggling to get loose and sweating profusley.  Legs shaking, eyes darting, hands gripped so tightly to the plexiglass board on his lap that I notice his finger is cut.  He is afraid.  He is freaking out.  Why?  The tech says she’s trying to get his vitals.  I get in front of him “look at me Michael”  and with eyes locked I say ” I’m here, it’s ok.  It’s going to be ok, you’re alright”.  I want to attack the technician but stay focused on my child.  Panicked, Mike says “sweat, I’m sweating!   I have sweat in my eyes!”  With my hands I wipe his face.  I wipe his eyes.  I keep the connection… “you are ok, just breathe”.  I show him deep breath out “whew” and I smile.  He breathes out “whew” and smiles back.  I take him back to his room, wet wash cloths to wipe his face and continue to sooth him.  He must trust and assume that those around him will not harm.  But I don’t.

I want to be there 24 hours a day, 7 days a week to.  I feel so protective over this very vunerable man-child.  The way we feel about placing our children in day care when they can’t speak to tell you when something is wrong.  I’m not implying that Michael is not getting the best care, he probably is.  There was probably a good reason that it looked like the tech was wrestling with him, holding him down like an animal.  Probably just being over protective.  But, until he can become his own advocate, I will most likely be a pain the @$$ to the Mt. Vernon staff.  Don’t mess with him.  He is not infinite.

I am reminded of Kevin Shon’s prayer ”God bless every Doctor, Nurse, and Medical technician that walks into INOVA every morning and every evening with your medical chart in their memory, your recovery on their conscience, and your tenacity in their hearts.”

Not wanting to leave without giving you the good stuff….Michael cheesed like no tomorrow when Amanda walked in the room tonight.  I thought his cheeks were going to pop off.  It was that laughing eyes kind of smile.  Their visit was filled with conversation (the current mike kind) and a phone call with laughs from Rachelle.  Nate and Sylvette joined Amanda to show Mike some love and to sooth their need for assurance that all is well.  The evening ended with Michael lifting Amanda’s hand to his lips.  Muwah…a kiss.  Pretty cool huh?  A late visit with his three best girlfriends and his amazing loving brother…what a way to end the day.    Nate, Amanda and Sylvette watched from just outside his view, and in the comfort of knowing he was loved,  Mike closed his eyes to sleep.  Goodnight Michael, we love you.