IVs and change

Gess started on IV antibiotics again today.  He is not happy about it, but seems resigned to the fact that they are necessary.  The whole process was pretty painless (which of course I can say since I wasn't the one being stuck by any needles).  Yesterday I emailed the nurse to check on Gess's cultures from the last hospital visit and to just report that Gess is feeling like crap and that something is wrong, so we need to talk to the doctor, etc.  His regular doc is out of town so my first reaction was "oh great, this is going to fun!!" since we had to deal with the "other one."  

But, the nurse asked a few questions and I was able to answer those and said,  "yes, it's time for antibiotics."  And the nurse got the orders and sent them to home health.  We are going with the big guns--2 grams of merophenem and tobramycin (IV).  Home health came out tonight and accessed his port and he did his first dose of merophenem.  He'll start tobra in the morning.

Gess and I also had a talk before this and decided that he would talk to work and either take some time off or at least work from home during this course.  He talked to his boss today and they seem completely fine with him working from home for the next two weeks.  He is going to have a meeting on Friday with the boss and the boss's boss to work out details.  Apparently the boss's boss doesn't think it necessary to get HR involved, etc.  So, I am optimistic that this is going to be a relatively easy request to handle.  We will wait for the more complicated stuff later.

To some staying home while on heavy-duty abx is natural, but for Gess this is HUGE.  He rarely takes a day off for this sort of thing, let alone 2 weeks.  I think that part of that is his attempt to prove that he can do everything despite CF.  He has beat odds, and wants to do so with gusto.  I get that.  But on the other hand, he doesn't get the rest that he needs and so no wonder his gets so worn down.  He says that the IVs make him feel like crap.  Hopefully the extra rest will help with that this time.  He will still be working some at home, which is probably a good thing too.  He gets pretty stir crazy if he isn't working...so this will probably be best for my sanity, especially with me being home right now too.  

I think that he is really scared right now.  He sees this as the beginning of what is to come I think.  He called me downstairs tonight to ask me what I thought about trying to get one of those beds that lets you elevate your head so that he can sleep more upright with the bleeding.  This is definitely not a conversation that he would have initiated a year ago.  Also, yesterday we talked some about disability...and that seems to be sinking in with him as a real possibility in the future.  It is hard.  He has recently had a couple of job opportunities literally fall into his lap.  Both would pay really really well and one would have international travel, which is something that he has wanted to do for a long time.  But, at this point, his health just would not support those jobs.  I think that really hit him.  He is not good at accepting that this disease poses limitations.  He actually seems to be handling it rather well, at least from my perspective, but knowing him, there is likely some brewing inside.  

So, we'll see.  I am a bit nervous about all of this.  About how I will deal with it and whether I can be supportive enough or not.  And of course, it seems to make my job search a little more pressing.

The next 2 weeks should be interesting...and I should get to bed so that I can be up for his 6 am dose!