Derek here.

The roller coaster continues.

I have been posting more frequently to Facebook, but I'll plan to use this platform to write more extensively. When we wrapped up Monday's post, we were contending with some dysfunction on the right side of Andrea's heart. Monday night, her numbers all looked great, and that continued into Tuesday. Yesterday (Tuesday) in the middle of the afternoon, Andrea had her breathing tube removed. That was a pretty exciting milestone, and was especially relieving as she had been struggling to convey some things to her that were bothering her. The day's good news continued when she put in the work to sit on the edge of the bed, and then stand and move a couple of baby-steps over to a chair where she was able to sit upright for several hours. Post transplant, the medical team emphasizes the need to get the patient moving and changing postures to aid in recovery and improve outcomes.

Yet, it seems like every time we take a couple of steps forward, we have a scary setback that knocks us back a bit. Andrea reported that she was unable to breathe.

The problem from our perspective was that she was breathing just fine. And her pulse oximeter was showing oxygen saturation around 99-100%. 

I should add here that, while Andrea is aware of her surroundings and recognizes me and all of her family, and addresses the medical team by name, she's just a little loopy still. This is understandable given the number of drugs that she was on during and after the procedure. Further, I learned today that there is a cognitive condition that the medical staff colloquially calls "pumphead" - postperfusion syndrome. This is apparently a consequence that many patients experience as a consequence of being on a heart-lung bypass machine. (More on this: Postperfusion syndrome)

Now, whether Andrea is suffering from pumphead, or whether these are just more routine side-effects of all the drugs she is on, isn't entirely clear yet. Further, she's also dealing with a considerable amount of pain today, and we aren't sure if she may have a bit of delirium associated with the severity of her discomfort. She is reporting some visual hallucinations, and wavers between being temperamental and overly apologetic.

So when someone in this condition tells you that they can't breathe, but you know that they're breathing, and you can plainly see from their vitals that they have fantastic blood-oxygen saturation, the natural reaction is to minimize what the patient is reporting.

Last night, maybe around 9 PM, we shifted her back from her chair over to her bed. And again, she was reporting that she couldn't breathe. It is worth pointing out here that Andrea also occasionally suffers from asthma, though infrequently. She carries a rescue inhaler with her, but rarely has to use it. At any rate, the nurse allowed her to take a few puffs off albuterol to see if that would relieve her symptoms. It didn't seem to make much difference.

Still, her oxygenation looked just fine. When I headed out, just a bit before 10 PM, she was very sleepy from having just received a dose of Benadryl to preempt any allergic symptoms to the drugs to combat organ rejection. I headed for home feeling pretty good about how she had done for the day and was confident that she'd get good rest.

This morning, I called into the ICU as I was getting chores done around the house and spoke with the nurse who had just transitioned on for her daytime care. It sounds like she had a rough night. They brought in an X-ray machine this morning to image her chest, and her right lung didn't look like what we wanted it to - there was fluid around it. Andrea's report of not being able to breathe was right on the money. Perhaps more accurately, she's just suffering major discomfort during each breath. As difficult as it is watching her discomfort, I'm sure it's a thousand times worse for her.

The medical team has determined that the best course of action here is to see if we can do more to drain the fluid around her right lung. They are going to do another incision on the right side of her ribcage and insert a chest tube to try to drain off more of the fluid. She's in the OR now, and will presumably be down there for a handful of hours. We're hopeful that this will relieve her symptoms and we'll get back on track again.

...and we just got word that the procedure wrapped up very quickly and she should be heading back upstairs shortly.