Preparing for the weekend

Wow - the weekend is finally here.  Probably our last weekend as a family in our home for at least two months.  I'm hoping the 'Jonathan factor' kicks in during his stem cell transplant and he continues to surprise everyone and recovers in record time.  The 'Jonathan factor' is a little joke we have with our primary oncologist - Dr. Twist.  Okay - so I've never said her name in my journal - but since my journal is not searching online - and I've checked many times - I feel it's okay to start using some names - especially since Dr. Twist is a good doctor.  So the 'Jonathan factor' is saying we have because at times Jonathan starts out being down and all of sudden he picks up and recovers very well.  Also - as various members of the medical team have said - when Jonathan is feeling well - you definitely know - because he is very loud, talkative and extremely active.

The unfortunate thing is that I have to work one day over the weekend - put in my eight hours (so to speak) - so I'm not looking forward to that - but hey - someone's gotta make the money - right?  The unfortunate thing is that this will be one of many weekends to come as we come closer and closer to our next release date.  I think this is the only downside to my present company right now - other than the looooong commute - but the positives have outweighed the negatives many times over.

So Sunday is the big day.  The 'big' party for Arielle and Gabby.  Unfortunately we couldn't invite everyone we wanted but at least we'll have a few friends over so it should be a grand event.  We kept expanding our list a little at a time as we remembered we 'forgot' someone but then we realize we have a small space I'm hoping that everyone on the current list can fit : ).  I'm hoping that next year - when Jonathan's immune system recovers - we can have a grand party and invite everyone who as touched our lives in some way.  But that is far off - I'll see how feasible that is closer to the time.

So on Monday - Jonathan has to go into Clinic E at Lucille Packard Children's Hospital (LPCH) at Stanford at 1:30 pm.  He'll get weighed, blood pressure and height taken.  They'll also draw some blood from his catheter and do a physical exam.  All of this is the pre-admitting exam for his admittance to the 2 North ward at LPCH.  The pre-admitting exam might probably take about two hours (with a lot of it being waiting) and I suspect that by around 5 pm / 6 pm he should be in his room.  This time Jonathan will be in an isolation room.  There are two sets of doors - the first door opens into a small room with a sink where incoming people can wash their hands and put on any gowns, gloves, etc...  Unless Jonathan contracts an infectious disease - incoming people will just have to wash their hands.

From the small room there is another door that opens into his room.  This time he gets his own room - which comes complete with its own bathroom / toilet and has way more space that a shared room.  The good thing is that we have already spent time in an isolation room so this is not new to us or Jonathan.  The air in Jonathan's room is filtered air and there are no windows that can open to the outside.  This means all the air coming into the room is cleaned / filtered and is sort of an isolated system.

Gabby even bought a new suitcase - to accommodate the amount of junk - sorry - stuff - that we'll be taking to the room with us.  Since the plan is for me to spend the nights and for Gabby to spend some nights and all the days we have to pack enough clothes for us (and Jonathan) and other things to make our stay feel somewhat at home.  I also want to print out some pictures of Jonathan and put it up to the entrance to the first door of his room.  I've seen some patients do this - and it's a cool way to personalize ones stay at the hospital.

Wow - two months in a hospital environment - about one month at LPCH and another month at the Ronald McDonald house.  It's going to be interesting.  I've already gotten approval from my doctor to increase the dosage of my anti-depressants - so now I'll be doubling up on what I take.  I'm going to start the increased dose tomorrow.  Hopefully that takes the edge off and also allows me to sleep in the night.  Lately, I've started back taking sleeping pills so I know I need to compensate by increasing the amount of anti-depressants I take.

Well ... I'm kind of glad I seem to be establishing a rhythm with my journaling.  I really want to journal at least once a week - but hopefully more and I seem to be keeping to this goal for the last couple of weeks.

Oh ... so I just thought of something I need to trash out.  My prayer life.  It still sucks!  I would have thought it would have improved but I guess since I didn't actively do anything to help it - it wouldn't improve!  But I'm not sure that this is necessarily a bad thing?  I remember my spiritual director saying that doing God's work can be done by doing God's work to those around me.  For example, in my relationship with Gabby, in taking care of Jonathan, in ensuring he gets the best care, being a good father to Arielle.  I know I'm definitely not a model 'child of God' but for some reason I'm not too alarm that my personal prayer life is not great!  I think my personal prayer life is one of spontaneous thoughts of God but nothing really formal or defined.  Maybe the 'extra' time in the hospital will help turn me around : ).

I am so in a writing mood tonight.  It's 8:42 PM and I'm still on the train to get home.  I took the super slow train - because I missed the faster ones.  After the 6:50 pm train from San Francisco - the rest of the trains are local trains, i.e. it stops at EVERY stop there is to make - or as I call it - the super slow train.  So instead of my commute taking 1 hour (if I took the bullet train) or 1.5 hours (with the limited local) it takes 1.75 hours instead.  At times it's not too bad - because sometimes I watch a movie on my laptop or I get to journal : ).

My thanks to all of you that continue to keep us in your thoughts and prayers.