Monday, August 18

Anticipating A Date

We woke Jackie up right around 8am this morning.  Shortly after Dr. K and his team came in.  We reviewed the weekend and discussed the one med we thought was making Jackie extremely tired.  We agreed to just give him a nightly dose.

Jackie was eating a good breakfast which ran into speech.  Amy came to the room and helped him finish as much as he could.  She even puréed a Reese’s Peanut Butter Cup and mixed it with the remaining amount of oatmeal.  A nice treat and incentive to eat more!  The second half of the session they went outside,  Jackie was more verbal than he has been in days. PTL

PT immediately followed speech,  Erin picked up Jackie and they headed to the gym.  Stretching and standing balance were the focus.  After the session, Erin said that Jackie did not seem near as tired and was also saying some words for her.  PTL

As soon as PT was over we got Jackie in bed for a nap.  The transportation van was coming a little after one to take us to Jackie’s doctor appointment with his neurosurgeon.  Transporting patients is quite a business.  Based on the patient condition the transport vehicle is equipped like an ambulance.  Teams basically work round the clock and wait for calls to take patients from facilities to doctors appointments or to hospitals.  The drivers are all different as well as the size and condition of the vehicles.  We have waited many hours for them to pick us up in the past.  Our pick up was an exception.  The driver was here right on time and did a great job avoiding bumps along the way.  This was important because we took Jackie in his wheelchair vs the stretcher.  Our experience at the docs office is usually good.  Not much wait either in the lobby or back in the exam room.  Unfortunately that was not the case for this visit. We waited a very long time to see the doc and then longer to wait for our transportation back.  It was an extremely long day for Jackie.  Fortunately his tilt wheelchair enabled us to do needed weight shifts throughout the afternoon.

Our appointment with the doc went well.  We were hoping to get the exact date of Jackie’s surgery but know it will be within the next two weeks.  Our neurosurgeon is a caring man and has gotten to know Jackie well over the last couple months.  His team is well aware of all the struggles Jackie has been through and they continue to work with us to take his recovery to the next level. At the appointment our doc sat down and held Jackie’s hand while talking with him.  I’m hoping that gave Jackie a comfort level about his upcoming surgery.

We heated up dinner when we got back and ended up feeding Jackie.  He was so tired and he needed to eat as much as possible.  We moved him right to bed and he took a nap.  He woke up just on time for evening meds.  While he was awake we spoke with Lindsay and Florent.  It was good for him to hear their voices.  As we were wrapping up the conversation we took the phone off speaker and handed it to Jackie.  I could hear Lindsay’s voice but not what she was saying.  After a brief pause, Jackie said, “I love you,” and started to cry.  We all cried.  I can’t wait for the day when Jackie can go visit Lindsay and Florent again.  That day will come…patience.

It had been a long day that ended with the sounds of voices that mean so much to Jackie.  I’m sure Jackie will be tired tomorrow.  We are hoping for a day to regroup and recharge.