Never A Straight Line

Today started early and continues to be interesting.

At night, Jim receives the anti-fungal infusion; the drug with the nasty side effects.  Last night we did a much better job of managing the shakes and fever.  

For our good work, we got a reward.  At 3:45 am Mr. was wide awake and bored.  Yes, this is a reward.

He was bored because he was feeling well enough to be interested in doing something. I gave him the laptop, but that was too hard to manage (shaking hands don't do well on mouse pads). I put the laptop away and plopped the Kindle reader in his lap (thank you very much, Alisa and family).  He could swipe a finger across the screen.  He spent nearly an hour reading Sigurd Olsen's book on canoe camping and the Boundary Waters wilderness before his finger stalled and his eye lids slipped down.  Only after I put the Kindle away did I realize that I knew he was awake because he'd woke me up.  How did that happen?  I'd been across the room, asleep, earplugs firmly in place when he called to me.  The only way I could hear him through sleep and earplugs was because his voice was loud. No, I'm not very bright at 3:45 am, so it took me some time to conclude that if he could make himself heard over the sleep and earplug obstacles that he was speaking loudly.This he could do only if he had the breath for it.

Neat. 

Jim has been on oxygen to help his breathing.  The oxygen blows into his nose through a small device called a nasal canula. The need for oxygen is determined by measuring the oxygen saturation in his system- they use a nifty little clip on his finger to make this measurement which must be at least 92%. On Friday night, his reaction to the anti-fungal medicine was so strong that he had to have the oxygen flow increased to 6 liters to maintain oxygen saturation at 92%.  Six liters is the all they will allow on the nasal canula. If he needs more to reach 92% then he has to use a face mask.  If he needs more than 10 liters, we are in trouble.  He'd been at 92% since Friday night. This morning, he was at 97% with 6 liters, so we lowered the flow to 4 liters and he's been over 92% at that flow rate all day.  Yeah.   

The other good news today was the removal of the catheter into the pleural space.  So little fluid was coming out of the space that the pump and collection device was no longer necessary.  Good to see that go bye-bye.  Now Jim can lay on his right side and doesn't hurt from a catheter tip poking him in the diaphragm.

His liver and kidney functions are stable. They've been working very hard to process the drugs. Stable is good.

That is about it for the good news.

As to the success or failure of the transplant and the possibility of a second transplant, the situation is less clear.  There are still little baby (monocyte) white blood cells in his body. Don't know yet if they are coming from the transplant done 24 days ago or from Jim's native system. We'd hoped to know this by today, but don't.  What's the difference and how does it affect the choices to be made?  Good question and I'm still trying to understand the answer.  The issue could be one of three things: one, the transplant may not have worked; two, the stem cells that were transplanted were too weak to function properly or three, that the transplanted stem cells are working but that they are being destroyed by the infection.  The risk of adding new stem cells into the mix (doing a second transplant) are that it may wipe out the efforts of the first transplant (if such efforts exist) or cause a reaction in and of itself which could bring the house down.  Optimistically speaking, a second transplant may work well enough to either become Jim's new bone marrow or support the work of the first transplant. 

Hope I've got this right.  It's difficult to always understand what's happening scientifically especially when you spend the night watching for tremors.  

Then there are the precious moments.  I've been writing this blog update while sitting at the desk right out side Jim's room.  He'd been alone in the room for oh, maybe 30 minutes.  I poked my head into the room to let him know that Alisa had called and sent him her love and that I wanted another 15 minutes to finish the blog post, could he wait?  "No," he says, "come in now."

"Why?"

"I want you to call the nurse."

"Why, what do you need?"

"I'm cold and I want you to call the nurse!"

At this point I decide that whatever the issue is, I have to don mask and gloves and go into the room. The blankets are down around his ankles and Jim is waving the foley bag at me exclaiming that he wants me to call the nurse; "I've been pushing the button for her but she hasn't come!"  Trying to tell him that pushing a foley bag was not going to bring the nurse really didn't cut much with him. Hell, those damn call buttons are a poor design anyway; maybe the call buttons should be on the foley bags.

So, for now, we hope he stays stable while we continue to weigh and measure the choices.  Hopefully the course will come clear in the next few days.  It is not clear today, but still, it was a day with some progress.