Little Setbacks

Just when I think I've got the hang of this and I'm learning what to expect, we are thrown through a loop again and all my piddly little plans go out the window.  I was feeling so good thinking I had things planned well and prepared for Jacob's third homecoming since his treatment began in April.  His counts started rising on Friday, and judging by the way they climb from his previous rounds, I was pretty sure he'd be ready to leave no later than tomorrow (Tuesday 8/2). Well, the counts stayed at 100 for two days instead of climbing at all. Ok, not a big deal...that is totally normal and just as I figured, they made a bigger jump to 300 on Sunday. Waaay excited now! I thought, "He's gonna do just what I plan and be 500 by Monday". Last month they let us go home on just 200 so I figured maybe they were waiting just because it was the weekend. (Weekend Dr's don't seem to like making big decisions or changes from my experience so far) I decided to go home Sunday afternoon and clean the house to get ready for him on Monday.

Well, this is not your typical weekly clean up the house job.   For Jacob, we have to disinfect everything in the house.  I spent about 8 hours on it and still didn't finish a few things I wanted done (like the refrigerator: that's kind-of a big one, but important to clean out any old food & leftovers etc.) We've gotta wipe down every door knob, doorjam, lightswitch, shelves, hand rails on the stairs, all the walls, countertops and the bathroom of course. Somehow I tweaked my back in the process and then went back to the hospital to spend the night with Jacob. Sleeping on the chair/bed in the hospital room only made my back worse. By morning, I could barely move.  (I forgot to mention that I already took home almost everything from Jacob's room so he wouldn't have to wait for me to pack, including my ibuprofen).  I also had a sweet camping cot here with a comfy mattress and all, but I took it back home so I don't have that luxury anymore. I figured we would be seeing the Dr. early in the morning with discharge instructions.

...Not what happened. 6:00 am, I am awakened by the annoying beep, beep, beep, beep.....of his pump saying the IV nutrition is finished. Check the clock...too early to ask for his labs...wait 'till after 7:00...can't sleep, ugh. Get up, put a hot pad behind my back and lay there hoping that it will soften the pain so I can move...not working. 8:00, more beeping...check the clock...carefully get up to ask for his labs. By now, he has the day nurse and they have had their little morning pow-wow and passing of the baton (chart).  She gives me the labs and apologetically says, "still at 300".  I check the numbers and think "she gave me yesterday's lab report!", then, "no wait, there's yesterdays list...the lab just ran the same blood over again!" It wasn't just the ANC that was the same as the day before. Everything was the same...exept for platelets.  That's the only number that told me it was no mistake.  Ya, Jacob has always loved his platelets and he made some of those overnight but forgot to make anything else...that little stinker!  Platelets aren't going to get you home honey.

The Dr came in to see us at about 9:00 to give us more news. Turns out, there's a couple of other obstacles Jacob has to conquer before he gets his ticket out of here. First off, he had a really rough night last night and barely slept at all because he's been on some pretty heavy pain killers and his body isn't ready to just stop them all at once. He has to be weaned off of these and that will take a few days.  On top of that, one of the lines in his chest stopped working and we discovered it may have a small leak.  It could have a clot or a kink, but for whatever the reason is, it's going to have to be replaced.  We knew they would be replacing his line before the transplant, but with this timing and this new trouble, it's going to keep us here a little longer.  Now, we are waiting for his counts to get to 500 so he can have the surgery instead of so he can leave. Since any surgery opens a risk of infection, they won't do it until his immune system is strong enough to be safe.

So... all that work I did at the house is probably going to be un-done by the time he finally is released.  I'm sure the boys at home are busy re-contaminating every touchable surface in the house.  Do I sound frustrated? Grrr....I don't mean to complain. I sure feel like a sissy when I think about Jacob! At least I can leave for a little while and come back.  Yesterday was the first day he left his room in three weeks! It's really starting to get to him.  I would do anything and clean every inch of that cute new little house of ours to get him home  right now.  I also forgot to mention how much I like our new little house and that I am soooo grateful that I don't have to clean every inch of that big old house we left behind!  No matter how much time I spent cleaning that place, it just never, ever really felt clean to me. This one cleans up pretty good :)

We have so much to be grateful for.  Every day, I thank God for the strength and endurance Jacob has to get him through this and for the strong body and organs God gave him that are dealing with all this abuse they have to put him through to make him better.  Above all, I am grateful for the daily reminders that let me know that all of this is in God's hands, not mine and there is no better place for it to be.  Jacob will be home when the Lord knows he is ready, when it is safe for him to leave and it's not up to me.