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.