April 2nd

Becky, bless her heart, has been recording the day's events and just called me with a meaty report for the blog. They have been so busy today, bounced between one conversation and the next, that communication can sometimes be delayed.

Currently, Dad has had a welcome dose of Dilaudid (due to trach pain and generalized pain) and a sleep aid and is resting.

Last night's 4 am trach change was mostly uneventful with only a minor drop in heart rate to the 60's and return to his normal with no intervention.

Dad has not been absorbing his tube feedings as well as he has in the past, so they have stopped and then slowly restarted his rate. They have given him a medication (Reglan) to help with absorption.

Dad's return to LTAC is still pending- waiting on insurance approval and medical clearance.

Over the past few days Dad's white blood cell count has plateaued at 23. Dr Springman (Infectious Disease) and Dr Lamar (Head of infectious Disease) both consulted on his case today. They did a physical assessment of him-looking for any signs of infection (redness, bumps, etc) and found nothing. They asked dad if he felt like he has had a fever the past few days and dad motioned "yes". His vital sign record has shown temps in the 99s with one in the 100s. They said that he still has a UTI, and that the chest X-ray remains abnormal- possibly due to mucus. They have started him on an anti-fungal in addition to his antibiotics. They recommend a CT scan to look for abscesses and further sources of infection but will wait a few days because of the danger associated with transporting him.

His PICC line (peripherally inserted central catheter) will be removed and replaced to prevent possible infection.

Occupational Therapy met with them again and said that they are doing all the right range of motion exercises.

Dad, once again, spelled "Get me out of here". He has made this request at each unit he has been in, including ER. Mom, with as much tenderness as possible assured him that if it were in her power she would throw him over her shoulder and they would run away together. Becky, was able to discuss with dad her emotions, from her month long hospitalization 5 (?) years ago, of feeling trapped, powerless and frustrated, and give voice to some of the same feelings that he must be experiencing. She said that he gave her lots of "yes" jaw movements. If anybody can sympathize with a long unexpected confining illness, it is Becky. She was the perfect comfort for him.

I was in contact with a support group today and was able to send mom and Becky lots of helpful advice from survivors of GBS. Becky offered to read some of their words to him but he was exhausted at this point.

Many of the GBS survivors commented on the need to have a communication system (check), to have a FAN! (check-Tim drove all over Clifton to buy him one), have family nearby (check), keep a record of events during their illness (check), take pictures to show them after they recover (check), read to them (check), share current events and family happenings (check) and to have simple things like your hair shampooed (check-accomplished by Nancy and Becky again today).

Mom was able to visit with the chaplain today and, I believe, found comfort in her words. She was encouraged to talk to friends that won't try to fix her but will let her experience her emotions as they come. Also, to see the resources that her friends are offering as a "menu" of sorts. Some days certain things taste better than others, some days you can't imagine eating anything being offered, and some days only a very specific thing will hit the spot! Mom stated "I have enough strength for today" The chaplain likened that to the Israelites experience during their exodus from Egypt- God provided the manna for each day. Any manna that they tried to horde quickly spoiled, but if they trusted him they received a fresh supply each morning.

Becky and mom were blessed unexpectedly by an anonymous kind soul leaving a Christ Hospital gift certificate in their room. Mom says "Thank you, friend out there! :)" The sweet lady in the cafeteria kept sending them back to get more items until they used every penny! ;)

Mom and Becky, in addition to being comforted, have also found time to comfort others. They have stopped to give directions to many and have been able to speak words of encouragement to those put in their path.

Mom says "Thank you Christ hospital for another night in a real room with a bed (They have a free sleeping room) We are getting expert at finding our way down to Steve at 4am for his trach swap. Even with eyes slit and in our "jammies"

Please continue to pray for restful and uneventful nights for all 3 of our precious family members tucked into Christ Hospital.