A lot less scared (day 5)

Everyone,

I started this update one way, as things were not going well this morning. But now I would have to say that Nancy is stable, and I'm settling in for a long wait. She is not going to recover quickly. What we are looking for is slow improvements. This morning was difficult, her heartbeat and blood pressure were all over the map, irregular beat, what is called superventricular tachycardia, or SVT. Her new catheter was apparently contacting one of her atria (heart chambers), and causing some of the problems.

Nancy is going to be on IV antibiotics for at least 8 weeks. We are going to be in the hospital for a while. And they are avoiding surgery if at all possible, because she should be able to eventually clear the abscesses on the antibiotic program. This is complicated, so I'll describe the issues after I give you the update.

Pulse 90 BP 88/51 SPO2 98% temp 36.3

Low blood pressure, basically because she is sedated with propofol, her blood chemistry is off and she's retaining 15 lbs of fluid. So continuous dialysis was started this morning using her new catheter, and her blood chemistries should steadily improve. All the fluid retention is due to her septic infection, so some of that may go down on dialysis too, or maybe not. But at least she should not get any worse.

Acetominophen (tylenol) is controlling her temperature. It's also possible that the antibiotic is starting to have an effect, but it's too early to tell. Her prednisone dose was reduced to 70mg/day today. Her GVHD continues to look better. She is sedated, so she is breathing comfortably, not in any apparent pain, and all her numbers are nice and steady. She is only making a little urine, so her kidneys are still mostly shut down.

* * * *

The bigger question is, will she have to undergo surgery to relieve the spinal abscess? I now have a clear understanding of how they are approaching this. The problem is that she has two epidural abscesses, one mid-back (T12 to L2) and one right under her skull at C2. Here are the pieces.

• the thoracic (mid-back) abscess is long and slender, and pressing on her spinal cord on the left side.
  
• it could hurt nerve conduction to her legs, so they are checking her nerve response in her legs frequently
  
• it can be operated on with a long incision if necessary, but there is a high risk of bleeding because of the location. There is also a risk of infection, because Nancy is on prednisone.
  
• the cervical abscess is around on the front side of her spinal cord, and is not pressing on it.
  
• it can only be operated on from the front, by going through her mouth and the back of her throat. Not recommended.
  
• the antibiotics will clear the abscesses over time
  
• her infection will not be reduced by clearing one abscess surgically, they would both have to be operated on, in two separate challenging procedures.

They are only going to operate on the thoracic abscess if it is impacting feeling and motion in her legs. In the mean time, we want slow, steady improvement, better blood numbers, and eventually, her kidneys to reactive and start eliminating all the excess fluid.

* * * *

So we wait. I will send updates each day as long as it's helpful, more often if something else happens.

Thank you all so much for your emails, FB comments, offers of support. We both appreciate it so deeply. I'm doing pretty well, getting my seven hours of sleep each night, taking care of household stuff and getting food. In fact, I'm going to grab lunch.

I feel a lot less scared today than I did yesterday.

Love,

-tdc