Day 12

Well if you happen to be admitted to UCSF during fleet week and you have a view overlooking the bay, you do have a nice view of the air show.

We have had an uneventful weekend, which at this point is what we want, while making progress toward a discharge date.  Laura's IRI level are now stable, above 2, while on Coumadin.  This is to address the blot clot in her calf.  Attaining and maintaining an IRI level greater than 2 is one of the two requirements for discharge.   The second requirement is the capability to have high flow oxygen at home.  We were able to find a system made by Drive Pharma that will enable 8-10 liters per hour.

The oxymizer pendant will enable her to have high flow oxygen with the hydrator while at home.  For those of you with similar needs this may help you.  It did take a few days for the team to find this as most patients are not capable of being at home while on high flow.

Eating has become a chore and as her body works harder to breathe her caloric requirements continue to increase.  After meals she has a 15-20 min period to recover from eating which uses more calories fueling the cycle.  Once home we will have to find a few high calorie (lower in sugar) shakes recipes.  If anyone has suggestions fire them across.

Laura is walking 3x a day around the floor. Probably 120 yards per lap.  The recovery time for a single lap takes 10-15 mins.  It is important to keep up physical activity and build strength.  When at home a walk up and down the block 3x a day will be a requirement as well.

With some luck we may be home tomorrow or Tuesday. As long as there is no decline or any significant changes to her oxygen needs we should be good to go. As great as the team is here, home will be a welcomed change. 

Her lung function will continue to decrease over time.  We have been told that it will be a more aggressive time line that what we experienced in the previous transplant.  The reason for this is that in the first transplant we were fighting CF and this time we are fighting chronic rejection.  We hope to receive a call while at home but if we do not given the decline we will have to be admitted at some point.  Fingers crossed for a call soon.

Thank you again for all thoughts and prayers.  Always appreciated. 

Cheers,
The Z's