Monday, March 31

Mixed Emotions

Today has already been a whirlwind of activity creating a cocktail full of different emotions.

The private room is wonderful!  It is at the end of the wing and has a nice large window that is currently allowing beautiful sunshine to warm Jackie’s body and soul.  Most importantly, the room is quiet.  We currently have the glass door closed to decrease the ever constant noises of nurse call bells, monitor alarms and visiting medical staff.  It is the right environment for a TBI patient.

Very early this morning both of Jackie’s IVs started leaking.  They needed to be replaced.  The nursing staff is to attempt the new IV sites; two attempts failed.  The IV therapy team was called in.  Out of three attempts, only one was successful.  Another IV therapy staff member came to the room and was able to get the last of the two sites in on the first try.  Jackie’s arms look like he is an addict.  There are just not that many places they can find to put in IVs or get blood.  Jackie has no choice except to be tolerable of all the pokes and prods.  I have actually seen him nap through one of his blood draws.

As soon as the IVs were in, we headed down for the CAT scan.  We waited with anticipation to speak with the neuro team, anxiously awaiting the next steps in the plan.  The results showed that the fluid amount was stable, but there was still some bleeding as a result of the surgery.  It was decided that waiting another day and getting a repeat CAT scan is best.  Patience is needed once again.

Even though there is no way to tell,  I questioned if the blood thinning medicine could have added to the bleeding.  We consulted with the medical team.  I needed to be more educated on Jackie’s blood clot and treatment.  Due to the location and other risk factors, we have decided to take  Jackie off therapeutic levels and based on discussions with the Neuro team tomorrow may alter his meds to include a low level drug.  We will reevaluate all of Jackie’s meds when we get to Magee.

Lenora, ST, stopped by with homemade gluten free cookies in her hand.  I’ve eaten several already along with some banana bread made by Florent’s mom.  So good. I do sugar, not caffeine.  The session went extremely well.  Jackie’s mouth and tongue movements are increasing and he even tasted a lollipop that was held to his mouth!  He also ate some larger ice chips.  Based on this success, Lenora scheduled a test that would show via X-ray if Jackie was swallowing correctly.  The result of the test was positive.  She may introduce a small portion of puréed food tomorrow.  All very positive and necessary steps to getting the trach removed.  Jackie also vocalized a couple sounds!

PT will work with Jackie tomorrow. We had him moved to his chair so he would have some total body movement today.  Until we get to Magee we need to find ways to stimulate him.  He is bored with just laying in bed.

We had a surprise visit from some of the staff from the Select Specialty hospital.  They brought a note signed by all of the team along with a personalized Flyers Jersey.   They felt Jackie needed to be dressed appropriately for his trip to Philly.  A very special gift from a truly caring group of medical professionals who we also feel are now our friends.

Some of Jackie’s nurses from ICU and Select Specialty have stopped down to see him.  He gave one of the nurses a beautiful smile today.  He still has game!

It is now time to get some power naps in before the night hits.  Last night Jackie slept on and off for about 2.5 hours.

Even though we did not head to Philly today, Jackie made major strides in speech therapy.  He even tried sleeping on his side for the first time.  This marathon is going to be long, it is also going to be full of many emotions.  We just need to take each mile as it comes and embrace the laughter and the tears along the way.