Escaping the Rehabilitation Institute of Chicago

Entry #12  Escaping the RIC                     March 19, 2015

8th Floor Rehabilitation Institute of Chicago

    We've now spent two full weeks at the RIC and even though the team assessment initially recommended that Dan stay here for three weeks, we've opted for two weeks of intensive therapy and then head for home.  In Dan's opinion there are three components to healing:  therapy, rest, and good food.  There is no doubt that this facility has some of the best therapy around, but it sure is lacking in the other two elements.  We are now packing to leave for home where therapy is scheduled to continue on an outpatient basis at Wheaton in Franklin.  It feels too good to be true!

We missed the first visit from Dr. Burt and team when
partying on the town one night in Chicago.

     Over these last two weeks Dan has worked REALLY HARD!  He's been distinguished as the patient on the floor that wants and would benefit from extra physical therapy.  So every time it's been offered, he's accepted.   He pushes himself to make the most of the time and proves it by working up a good sweat.   I can't begin to count the number of times I've given him a cool wet washcloth for him to wipe off!  The physical therapy has moved him from initially being able to briefly stand on cramping legs to walking with assistance around the 8th floor three times without stopping.  He hasn't regained any feeling in his hands and feet as of yet, so walking, even though assisted, takes a lot of concentration.  Looking back to the blogs posted by previous stem cell transplant patients reminds both of us that  many of the same struggles he faces have also been experienced by others.   Dr. Burt also reminds us that each person with CIDP can also be unique in recovery.      

     We're now ready to meet the next challenges head on, taking with us all the new things we've learned in the past two weeks:   1) Holly runs a challenging PT class! 2)  Escaping the RIC every night for supper is a must to get a decent meal and clear the head.  3)  Meal vouchers for the cafeteria may not be used to buy Dove Bars! 4) Dorothy Gale was right, "There's no place like home!"

     They say time flies when you're having fun.  The last month felt like a year.  Here's to experiencing lots of healing in the next months as spring begins and probably flies by once we're back at home.  It's a perfect time to make plans for the perennial gardens, watch the trees bud out, and see the bulbs push through the soil.  Oh, and then there's is the start of Dan's favorite spring sport!  Go Brewers!

Entry #11 Step by Step

Entry # 11  Step by Step                                             March 12, 2015

Looking forward to taking steps on the beach on Siesta Key.

     Dan was transferred to the Rehabilitation Institute of Chicago a week ago.  But even though his white blood cell count indicated his stem cells had started doing their job, it was still obvious that there was a major need for Dan to regain strength and flexibility.  Obviously it was a huge disappointment not to be heading home but knowing therapy was a necessity, and having heard the great reputation of RIC, we secured insurance approval, and Dan was transported via medical transport within a few hours.

Dr. Burt and his fabulous team:  Amy APN, Allison APN, Dr. Burt, Dr. Han, and Kaitlyn PA-C

Packed and ready to go to RIC.

     Getting admitted at RIC was a bit of a shock.  It was Friday evening and Dan said it was like a step back into his college days.  To say that his care at Prentice was incomparable, where the nurses and caregivers spoiled us with their attentiveness, was an understatement.  He would now reside in a double room that was smaller than a postcard stamp.  In his opinion, sharing a room with another patient didn't come close to complying with HIPPA laws, and it became all the more absurd hour by hour.   Lack of privacy and claustrophobia was unbearable in a room where beds, lifts, equipment, and wheelchairs constantly collided.  Nurses and nursing assistants worked in conditions that made it impossible to be efficient.  Thankfully the nurse manager recognized the issues Dan faced and he was moved a couple days later to a room double the size for two patients.

Physical therapy session with Ryan on Tuesday.

Standing and reaching, now Dan will be ready to unload the dishwasher when
we get home!

Holly and the physical therapy staff run tough sessions, but they've gotten Dan to his feet unassisted in
only 5 days.

    But lest you think we only have complaints, there are two highlights of this current residency.  First, the therapy is great.  Dan is making slow but steady progress with physical and occupational therapy for a total of 3 hours each day.  Today alone he far exceeded yesterday's accomplishments on treadmill and "sit to stand" strength.  Therein lies the sole reason he is hanging in there to endure the accommodations.  Step by step, day by day, he's gone from absolute immobility seven days ago to walking all the way around the floor with a physical therapist at his side.  There is a way to go, but he knows his goal is to get to the point where he can safely manage at home and then continue with outpatient therapy in Racine.  The second highlight is getting a daily pass out of this place!  The food is unappetizing so we've made it part of the daily routine to go out for supper after therapy is done.  Using the wheelchair, we "roll" to a restaurant in the vicinity of Northwestern.  We've been to Blaze Pizza, Epic Burger, TGIFridays, M Burger and the Corner Bakery.  It's the one practice that helps with the emotional side of healing by escaping to get fresh air and finding an alternative to the institutional food served to patients.

Construction continues on the new Rehabilitation Institute of Chicago just across the field.
All rooms will be singles with state of the art therapy facilities.  

     I pray the prolonged time away from home is nearly over.  A conversation with an RIC representative yesterday morning indicated we're on target to get home by the end of next week, at the latest.  They are already working on communicating his therapy needs to Wheaton where he'll continue on an outpatient basis.  Then Dan can celebrate his homecoming with a new immune system, a weak brandy old fashioned, and restful sleep in his own bed.    Grandpa, Megan, and Matt will be celebrating too.   

Taking a Detour

   

Looking forward to casual days like these on the lake.

                                                                                                                           March 5, 2015            

Entry 10:  Day +9  and an Unplanned Detour

     My phone rang earlier than usual this morning.  Dan must have had help to call me because his fingers and hands have been rendered useless by a CIDP flare, so I knew something was up.  Sure enough, it was Dan with the good news that this morning's lab work indicated an increase in his white blood cell count.  Praise the Lord!

No matter what situation comes your way, remember that God is 

sovereign. God is in control! God is bigger than any circumstance 

in our life. God can work everything together for our good  And we 

know that all things work together for good for those who love God, 

who are called according to his purpose (Romans 8:28).

     I've not posted a blog for over a week because Dan has been through a terribly difficult week.  He began to feel what limited strength he had begin to deteriorate soon after the transplant, ultimately resulting in being unable to walk, stand, and finally having no feeling in hands and feet.  He couldn't even use the TV remote, computer, or phone.  I guess it's an understatement to say we panicked when Dr. Burt ordered the start of IVIG infusions.  Dan was praying that he would never need them again, but knowing his body, he welcomed the medicine that has kept him mobile over the last three years.

     Initially my concern was why the flare even occurred considering he no longer has a functioning immune system to attack his nerve linings.  But Kaitlyn, Dr. Burt's PA, explained that it's possible for there to be inflammation from the chemo and drugs causing such a relapse and not to worry.  It doesn't mean that the transplant didn't work.    A "crash" such as this has happened before to other CIDP stem cell transplant patients and will just requires a slow weaning from IVIG treatments.  I pray that all the assurances from the transplant team materialize on the road to recovery ahead.

     In the meantime, Dan has had frequent blood draws monitoring his progress.  Every day he receives antibiotics and other meds including anti-fungal, anti-viral, blood pressure, potassium and many more I can't even count.  As needed, he's also received units of blood and/or platelets to keep other levels safe.  Keeping him stable in that regard has been a success, but as far as mobility, he still has not rebounded.   That fact prompted a conversation yesterday regarding Dr. Burt's recommendation that Dan transfer to the Rehabilitation Institute of Chicago (RIC) for a short but intensive therapy stay once he reaches levels in his white blood cell counts indicating he is ready to be discharged.  Within a couple hours of that conversation, there were two doctors from the Institute visiting Dan's room and assessing his condition.   Things sure happen here in a hurry !

Entry to the transplant floor requires a stop for hand washing
between two sets of air locked doors.  (I guess my morning
cup of coffee for Dan made it into the photo!)  

The entry sign reads "Special Patient Care Environment."

     

     So our tentative plan now includes an unexpected detour.  Considering that Dan's white blood cells are beginning to increase, he will be scheduled to have a fifth day of IVIG tomorrow and as long as all other counts remain stable, Dan will be moved to the RIC for acute inpatient therapy.  Anticipating that this will occur on Saturday, Kaitlyn dropped off an envelope this morning detailing discharge instructions.  I'd say we're heading in the right direction.  Praying for no other detours along the way.

My nook in the hotel room for watching TV, typing blogs,
and playing mindless games at night.