The “C” Word – Day 64 Day of Rest

Finally, all of the anti-diarrheal meds are having some effect.  However, as previous nights have shown, by the time we get to sleep it is nearly midnight and our first wakeup call is at 3AM for the meds once again.  And as soon as he wakes up he needs to go to the bathroom – with the bedpan.  That means that I am up and out of bed as well.  Another early start to the day.  As we did yesterday, he sat in the chair for a little while and eventually wanted to lay down as he was simply exhausted. But he couldn’t get comfortable in bed either as the mattress sunk down low where his butt was.  I figured out a way to have him sit in the chair that converts to a bed but left it in chair position.  We placed a lot of pillows around him and soon he was dozing on and off for the rest of the morning.  The good news is that his bouts of using the bathroom have dwindled by perhaps half today – still a lot but for us is better than before.  So he can stay put for longer periods of time and get some rest. The hard part for him right now is that he doesn’t know if he just has to pass gas or go to the bathroom.  To be safe, he goes to the restroom.

Though early in the day I attempted to get some additional rest, it was not to be.  Once he was settled into my cozy chair I was not going to be able to get any sleep or close my eyes.  I feel as though I am the mother of a young baby and have gone into that mode of being able to function with very little sleep and, even then, that sleep is constantly being interrupted.  There are moments during the day when I can feel my eyes fighting to stay open and my brain trying to shut down so I have to find ways to stay awake. The moment will pass and once again I will do what needs to be done.

George ate more today.  Two boxes of Rice Krispies for breakfast, two bowls of soup for lunch, another Jamba Juice smoothie and, tonight for dinner a half sandwich from Panera’s with some fruit.  The good news is that there were a few things he was actually able to discern what the taste was.  Apparently in order for him to ‘blow this joint’ he has to produce some solid BM material – so I think he will need to increase his intake in order to do so.  It will be a balancing act for awhile to find the right dose of anti-diarrhea medication and prevalite (referred to by the nursing staff as cholestyranime) to get his intestinal tract to learn how to function on less than 100% capacity. 

What does this mean in relation to looking toward a release date is anyone’s guess.  The doctor’s partner came in today and made some mention of a meeting perhaps tomorrow with the hospital staff to go over what the next step(s) will be.  I have a feeling there may be some rehab time for George and then I have to figure out how to handle that type of change with my own need to get home and take care of things there.  I hate feeling the push and pull of where to be.  Having observed how things are handled here at the hospital there is no way I would leave George alone for any length of time.  He is not able to remember details of what is going on with his care and what kinds of meds he is taking.  He cannot keep track of how many times he has gone to the bathroom in order for the staff to record it.  While he can do okay alone for short periods of times, he requires some help with his personal care and the staff are so busy you are lucky if you can get them to respond to calls for assistance in under twenty minutes.  I can see the importance of having an advocate in the health care system.  I wonder how others in similar situations (extended hospital stays) do it?  For me it would require that I feel that the staff on hand are available to quickly respond so I have some trust that they will provide great care.

Sometimes I wonder about things at the hospital.  For instance, over three days ago a wound care specialist came to check George’s rather tender behind.  She ordered up some special ointment and then requested a different, better bed for George.  They were able to find said bed and made the transfer.  The mattress was poor quality as I stated above.  For three days George has struggled to find a comfortable position in this bed and his tail bone is also now very sore.  We couldn’t figure out why they felt the need to change beds because this certainly was not better than the previous one.  We made mention it to one of the nurses this afternoon and asked if he could get a different bed because this one was so bad.  She walked over, flipped a cover on the base of the bed and turned it on.  It turns out the bed is one of those where the mattress is constantly inflating and deflating in order to help patients not get bedsores.  It moves rather randomly all the time to provide relief.  Again, I have to say WTF??  How could he have gone three days and not one staff observed that the bed wasn’t turned on.  The staff that brought it in should have turned it on right away!  Geesh!! (And, the ointment for his bottom took over 12 hours to be processed and brought up to us.  We are not allowed to administer it ourselves.  Only the staff can do it and he is allowed one application per shift.  Each time they administer it they have to scan George’s wrist band and then scan the tube of ointment.  Are we being charged by the tube or by the application??

While George has been free of an IV all day today, since they did not do the lab work until late this afternoon we just found out his potassium levels are low (still) so he will soon be hooked up for at least a few hours to the IV unit.  At least he is having to use the restroom less so we don’t have to worry about the constant need to pull that thing around the room to do so. 

I have a feeling tonight we may actually be able to get a decent sleep.  If we go to be around 9, just after evening meds are administered, we will have 5 hours of quiet.  Assuming that the Immodium and other medication is doing what it needs to do, George may be able to stay asleep for a longer period of time.  With his bed now properly functioning the bed should be relatively comfortable. 

I will end today’s blog with a haha moment.  Last night when we were readying to put the CPAP unit on, George decided to use one of his chin straps from home.  He put it on and said, “Geesh, this thing is all stretched out, it doesn’t fit!”  I looked over at him and laughed and said, “Honey, the strap did not stretch.  You have lost a LOT of weight including in your face!”  He found that unbelievable.  He did weigh another 4#’s less this morning for a total loss from original weight of about 14 pounds. He is only now beginning to see the change in his size. I had told him he delivered a good sized baby and had guessed he lost somewhere in the range of 15-20 pounds just based on the belly size before and after.  As he finally disperses some of the remaining fluids from surgery his actual weight is now showing up. 

Tomorrow I will work on building up his strength again.  I hope to be able to get him to walk up and down at least a few of the stairs.  As reluctant as he is, he is now realizing that he needs to do these things to help his insides get back to the business of working.