Exactly How Long is Half of Forever, Anyway?

We have reached the halfway point.  Dylan has been home from the hospital 6 weeks now, and that means we are through 6 weeks of his 12 week IV meds.  It sounds good to be halfway through, but looking back it seems like we have been doing this FOREVER!  So to be half way through with forever, means it still seems like we have forever to go before it is all over and done with.

I thought things would be easier by now.  In some wonderful ways they are.  Dylan is mobile and active again.  He is feeling better, and that alone is wonderful.  His new mobility comes with its own set of problems.  He now has to go to physical therapy.  Three days a week, and hour at a time, for 6 weeks.  It is all the way in Palm Desert, and tremendously complicates my already crazy schedule with a in-home teacher, in-home nurses, day-long trips to Loma Linda.  It would be crazy enough if I only had Dylan, but I have 5 other kids who have schedules of their own, and who still happen to need their mother.

And of course, along with the physical therapy comes pain. Dylan worked so hard at PT yesterday because he wants so badly to be back to normal again.  He used to be the fastest runner in his class, amazing at sparring in taekwando, a real high kicker.  But now he can't do any of that.  Yesterday he said, "I am tired of saying 'I used to be able to...' ."  So he has been working so hard.  Poor kid sat in the living room chair crying for hours last night because his long neglected muscles were aching so much.  It is necessary pain, but I hate to see him have to go through it!  

And, of course there still is the insane all-day, all-night IV med schedule.  I am so, so, so tired all the time.   It is relentless and never ending!  To make things worse, over the last 6 weeks his PICC line has gotten slower and slower, which makes my job harder and longer.  What used to take an hour, now takes two, and it is taking real muscle (something I am rapidly losing, since I have given up trying to fit exercise into my life) to push the syringes in.  It is really frustrating.  Before Christmas I told my doctor it was a problem, and she ordered some procedure to be done to help clear the line.  Apparently, the home nurses we use don't perform the procedure.  But nobody told me or the doctor that.  When we went to Loma Linda yesterday, the doctor was surprised that the procedure had not been done, and ordered another one. 

She also said that his SED rate, the inflammation rate they test in his blood, was not dropping as fast as she had hoped , and was dropping at a lower and lower rate each week.  This, apparently, is not a good thing and caused some concern to the doctor.  But as long as it doesn't increase, there isn't need to worry.   It just might take longer, which might mean more weeks of meds.

So after our appointment( which took hours, by the way) Dylan and I ran a few errands around there, and even went out to lunch, which was nice.  We finally got home in late afternoon, and my Mom asks how the procedure went.  What procedure?  Apparently, while we were still there, the doctor's office called here and said that Dylan needed to come to the ER there in Loma Linda to get the procedure done.  My mom told her to call my cell phone.  Sure enough there was a message on it telling me to go the the ER.  For some reason I never heard the phone ring, and was never given a missed alert message.  When I realized the I had been RIGHT THERE, and I could have easily taken him in to have it done and quite possibly have the nightmare solved, I BLEW a FUSE!  Not a happy scene.

Of course if I had had my bluetooth in my ear (see previous post), I'm pretty sure I would have gotten the message.

Now I have to find time to take him all the way back there to get it done.  Why can't things just work out?

So that is where we are at: halfway through forever.

I don't know if I can hang in there for another forever... or six weeks even.