Another Setback

We arrived home Thurs. July 20, following several days in the hospital recovering from the bleed near one of the surgical sites.  The hope was that with the help of a blood transfusion and a “coil” in the site of the bleed, that things would settle down.  The task was to find a way to get me able to eat sufficient calories to stop the dramatic weight loss – a very difficult task, indeed.  I was lacking in energy and chose to sleep most of the time.  However, we had a reassuring visit with Prithema, the chief resident on the surgical team, following Monday’s CT scan, which satisfied her that all drains were in place and things were healing properly.  She felt I was about to turn a corner in my ability to eat, so that I could regain strength.  However, the decision was made to delay the scheduled resumption of a new chemo drug to address the Multiple Myeloma (this was to have been an 8-hour infusion Wednesday, 7/25), to allow me to recover further from the surgery before introducing another assault to my body.  Reassured, Barbie even began to hope for a couple of days on Cow Island.

 But Tuesday at 3PM, I developed a painful stomach ache.  Not just an upset tummy because of something I ate.  This was more like something was burning away at my stomach.  Eating was out of the question.  What to do?  Then around 9PM, all doubt was resolved, as I threw up green bile.  I could tell it was coming, so I grabbed a waste paper basket to receive it.  Unfortunately, it was not a new item, so it had a crack in the bottom, lending an almost comic aspect to the panic at the event itself.

We called the surgical hotline, and the doctor on call got right back to us.  The recommendation was to tough it out through the night, and then come into the Beth Israel Emergency Room early on Wednesday.  Actually, blowing lunch made the stomach ache somewhat better, so toughing it out was not that hard.  We got into BI really early, as Barbie got up at 4AM, and decided to beat the traffic.  Then around 8AM, I had a repeat performance, so they added anti-nausea meds to the IV.  Most of Wednesday was spent in the E R, waiting for a hospital room to become available.  Late Wednesday afternoon, we returned to the now familiar the surgical suite where they performed endoscopic procedures during the diagnostic phase. This time, they used these techniques to place a feeding tube into my intestine (beyond my stomach), entering through my nose.

You might well ask, what does a feeding tube have to do with barfing up green bile?  Well, in the month following surgery, I lost 30 pounds, sometimes at a rate of 2 lbs. a day. Clearly my efforts at eating were not working out.  Frequently I would eat enough to overwhelm my stomach, and then I was unable to eat anything at the next meal.  Perhaps the green bile was in reaction to my efforts to maximize the amount of nutrition I was taking in.  {Maybe not directly related, but helpful in the larger scheme of things.}  It became abundantly clear to everyone that I could never eat a sufficient quantity to maintain weight.  The past two hospital admissions included a diagnosis of “severe malnutrition”.  Needless to say, in this condition, all I felt like doing was sleeping.

Once the feeding tube was in and they ramped up the rate at which it deposits its liquid nourishment in my intestine, my stomach and innards seemed to get straightened out.  During the aftermath of the tube insertion, they suspended all food intake until the general anesthesia wore off.  Surprisingly, for someone with my normal appetite, that was no problem.  Then for 2 meals they had me on a clear liquid diet again.  I am on a feeding tube diet of 65 mille-liters of Jevity (the brand name for the light tan liquid nourishment) per hour.  This woke up my bowel system, and things began flowing.  {The first output had a distinct dark green color, so I suspect it brought some of that green bile along with it.}

The idea is that I can rely upon the tube feeding to support basic nutrition.  I don’t have to force feed myself to achieve the minimum input to support my metabolism and counter-act the weight loss.  I can eat what I like and give my digestive system time to recover from the surgery.  Which they say will happen in time, and then I can be back to my normal self.

Meanwhile I have a pole with a pump on it and a bag of Jevity wherever I go, which is a major pain.  At least the hospital is designed for people to walk around with IV’s dripping from poles, or tube feeding pumps on portable poles.  No rugs.  No thresholds.  No narrow passages where you have to lift the pole over everything.  No stairs.  All of which are features here at 61 Sudbury Road.  So I am motivated to get to the next stage, which is tube feeding only at night.

Just as I was motivated, once I was off my back, to get out of the hospital.  The hospital is very nice when you are in full recovery mode, but once you have turned the corner, a good read will only take you so far.  Plus I had a roommate like you read about.  A loud fellow who made all sorts of bodily sounds.  And who was a king of drama.  A diabetic for 35 years, he knew exactly what he wanted for insulin and diabetic treatment.  When the authorities at BI prescribed something else, the debates were intense.  The roommate rarely stopped talking to listen to whomever else was in the conversation.  And he was worried about his dog, a pug.  Apparently someone had called the dog officer to report a dog alone in his apartment, and he was worried that the dog officer was going to confiscate his dog.  This led to a number of phone calls asking people to care for, hide, or take away his dog.  And to a rip-roaring message left on the voicemail of the person who reported the dog to the dog officer that featured just about every insult and curse in the book. (This conversation coincided with Scaramucci’s obscene rant, so similar in tone and basic vocabulary.) Phone conversations featuring tears lasted well past the 9PM start of quiet time in the hospital, and I had to ask Rob to resume the calls the next morning.  The solution was to leave the room and camp out in the Solarium at the end of the hall.  There may have been other drama I never witnessed.  I sure hope the next person they put in my bed is as mobile as I was.  I can’t imagine being stuck in that room 24 hours a day.

Ultimately, I was released on Saturday.  But there was drama with the release as well.  I had to have feeding tube supplies and a pump when I got home.  There is a standard contracting company that provides these.  The hospital’s understanding was that they did not do deliveries or training over the weekend.   Barbie found this incredible so pursued the issue with representatives located in out-of-state headquarters, who confirmed the company had 24-7 service.  She arranged for a Saturday delivery, where the driver making the delivery could train us on how to use the pump.

When the materials arrived Saturday evening, the driver knew nothing about pump set up and training. I had been trained in the hospital on the pump and tubing setup they have in the hospital which, naturally, was not the same as the materials for home use.  But at least I understood the basic idea. The best they could do was someone to train me over the phone.  Which is what we did, and it was good enough to get things going.  And to impress me how it totally immobilizes you.  Luckily we had a visiting nurse come Sunday morning who was able to review things and confirm that we had things set up correctly.  We see the surgeon, Dr. Kent, again on Monday, and I will lobby to move to the next phase (16 hours on the pump, 8 hours off) as soon as possible.

This time I promise to keep the drama to a minimum.  To the best of my ability.