Day 8 Update

Much has happened since Sunday's entry, involving lots of ups, downs and detours along the way.  Real progress on the road to recovery,  though Greg is occupying the far right travel lane reserved for slow-moving vehicles hauling heavy loads.

Highlights:
- Fevers persisted Sun/Mon, as did continued tests to find the source.  Antibiotics increased.  Spot of pneumonia observed, so increased level of pain dosing recommended to allow Greg to cough more productively.  Fevers gone now, though he will remain on heavy antibiotics for several more days.

- Day 5 (Monday) removal of NG tube that was suctioning stomach secretions and causing him great discomfort, interfering with the ability to talk.  An intermediary step was disconnecting the suction pump and allowing the tube to drain naturally using gravity.  This less aggressive approach produced the desired reduction of gastric juices, so they were able to whisk the tube out in a single 16 second gesture (recorded on video)....and suddenly, he appears a new man!  Gradually his voice has been returning, though it is not yet robust and tires easily with use.
- The tube draining liver bile has been capped, eliminating one of the unattractive plastic sacks swinging below his johnny.  The two remains drains are situated above and below one of the difficult to reach newly stitched junctions.  Nurses collect the fluid, measure it and send it to the lab to be cultured, just to ensure that no infection develops at that site.  I hope that those dangling sacks will be able to leave soon, as well.
- Transition to food.  Tuesday (Day 6), he was allowed the first sip of water...accompanying a resumption of acyclovir, a medication he has taken 3x a day since the stem cell transplant that fends off Shingles.  (He will never be able to receive live vaccines, so will be on this medication for the duration).  Because this was tolerated, they moved him to clear liquids (tiny amount of jello and apple juice).
- Wednesday (Day 7) he progressed to "full liquid diet", but this had a major consequence.  Fortunately, his bowels had begun to wake up Tuesday.  Wednesday morning, they let their displeasure be known in a sudden and massive eruption, details of which Greg will disclose to those who really want to know.  I will only say that the result took an experienced team of 3 with heavy duty equipment over 30 minutes to restore order.  I do not remember that our wedding vows or any pre-nuptial agreement included my agreeing to deal with anything of this order or magnitude!
- Today (Thursday, Day 8) he was allowed to order a very small, bland breakfast.  Meals are to be small, frequent, fat free...Did I mention that they weighed him on Wednesday, one week after the surgery, and he had lost 15 lbs!  Brian's comment was that some of that was from the loss of organs....
- Looking ahead.  Yesterday they inserted a PICC line in anticipation of his being allowed to return home some time in the next couple of days.  Predictions vary, depending on which doctor, and which aspect of his case they are prioritizing, but it seems the basic criteria are: the ability to process simple foods without nausea (or other even more dire responses); the means to continue the IV delivery of antibiotics; an increased ability to move about a bit more (stairs, for example.  Someone from PT is supposed to work on that with him.)

Although everyone has always stressed how long the recovery will be, I was still unprepared for how overwhelming this has been for him. Of course I am used to seeing him fall asleep frequently, borderline narcoleptic that he is.  But I am not used to seeing him so totally fatigued.  A 30 minute conversation or interaction will be followed by hours of sleep. The doctors continue to remind me that he is "acutely healing", and that extreme fatigue will be with him for many months.

Meanwhile, because the surgery caused so much inflammation and he is receiving such heavy doses of antibiotics, it is fruitless to test his free lambda levels, which were dangerously high just prior to surgery.  The doctors emphasize that they must continue to triage his issues, so the one that we have been so worried about and tracking so carefully for the past 5 years (Multiple Myeloma) is completely off the table, at the moment.

I absolutely cannot conclude this without an editorial, especially as the mantra "Repeal and Replace" is the blind rallying cry of so many vocal politicians....who, by the way, just happen to make sure that they have much better health care options than are available to the rest of us (the field was leveled under the ACA, but the Ryan/McCormick proposals would reinstate special plans for our elected officials, who are busy restructuring limited options for the rest of us).  We were both self employed, at the mercy of expensive, crappy plans that would never cover Greg for preexisting conditions and that we know would have found ways to weasel out of covering catastrophic events such as this.  Thank heavens his major medical events have occurred once we achieved the safety of Medicare, and our excellent supplemental plan (Blue Cross/Blue Shield, in our case.)

I hear that "Life time caps" are back on the table.  In our case, a Life Time Cap IS a Cap on Life!  Where is the logic behind "pro-lifers" whose concern for the sanctity of live stops at birth?  Greg has had some pretty bad luck in the serious disease arena.  He has met these physical and psychological challenges with admirable resolve.  Should a bunch of hypocrites in Washington set the terms for when his opportunity to resume a constructive life is finished, in all practical terms?

As always, thank you all for your kind words and thoughts. You can do us all a favor by supporting politicians capable of unselfish empathy for someone other than their wealthy supporters.

Barbara

First meal in 7 days

Look ma, no pole!