The “C” Word – Day 67 Crap – Another Delay

[Note:  Hours after this was written things turned around.  What you see here is my venting of a frustrating day which I am sure is typical of many caregivers in hospital settings.  Day 68 will show what happened after this.]

Honestly, I am so tired of delay after delay.  Just when we think we are going home another glitch in the system.

George had been complaining of shortness of breath for over a week.  Finally the dr. ordered a chest xray on Monday (which took 12 hours before they did it).  Of course, then we have to wait until Tuesday morning to get the results.  At the same time as the xray order the doctor asked for a pulmonary specialist to come in and take a look.  Our doctor suspected fluid around the lungs but wanted the chest xray first to rule out pneumonia.

On Tuesday he asked the pulmonary doctor to come by again and that never happened.  At 11PM last night (Tue) we get news that our doctor had ordered a CT scan with contrast to be done and it was scheduled for last night around 11:30 - - - but of course, with the way things go around here it was 12:45 AM by the time we had it done.  Back to the room at 1:15, get woken at 3AM for regular round of meds, again at 5:45AM for vitals and, of course, we have to get him weighed by 7AM.  All that made for not much sleep again last night.

Normally blood is drawn at around 5AM but that did not happen this morning.  The CNA said that someone started making rounds but got called away.  A phlebotomist showed up around 7:00 and when we told her that we used the PICC line she went to find a nurse.  She never did come back.  So the lab work did not get pulled until just after 8AM. 

The pulmonary doctor showed up at 6:30 this morning and said that they saw quite a bit of fluid around the lungs and would order up a procedure to drain this fluid.  When we asked if that would delay our going home today he said that it might.  But he also said that this procedure is often done as an outpatient.  He did not know how long it would take for them to get George in to have this done.

Our doctor showed up around 8AM and knew about the orders.  He said that we could probably go home today or, if that did not happen the latest would be tomorrow.  It depended on when the procedure was done.

At 11:45 they took George down to drain the fluid.  He returned about a half hour later a bit tender but breathing better.  They drained nearly a 1 litre bottle of fluid off of him. 

It was looking good that we would be able to get out of here by early evening… until the nurse came in around 1PM and said his potassium levels were low again and that they had to hang some bags.  She did not, however, say how many would need to be done.  Again we are thinking that if they start the bags soon we might still make it out of here today.  Around 2:15 she said she had ordered up the potassium and she promised to start hanging the first one before her shift ended at 3PM – and that did not happen (when does anything around here happen when they say it will).  The change of shift happens and we still have no word from the new nurse about what is going on.  I finally flag someone down to find out about getting the potassium hung.  She finds a nurse who finally comes in to start hanging and says we have six bags of potassium to hang.  SIX!  That is AT LEAST SIX HOURS of hang time – and that depends on whether or not they change the bags on time.  And that never happens of course.  So another round of delays and I am just so tired and frustrated.  I want to go home!!  

We could have caused part of this problem ourselves (potassium deficiency) by not insisting that George take his nutritional supplements while he stayed here. They arrived every day like clockwork and he brushed them off.  He even made the doctor change the kind of supplement to one he liked but then decided he did not like those either.  That makes me angry – but George is a grown man making his own decisions…. Even though some of those decisions are clouded in judgment because he has not been feeling well.  I am kicking myself for slacking off on the nutritional supplements but I grew weary of trying to force feed him so I stopped. 

The other bothersome thing is that at home we will have no idea if his potassium levels are low.  There are foods that can help but only if he will actually eat them on a regular basis.  Even then we will not know if it is enough.  He has been eating here but only just barely three small meals a day – and none of them potassium rich foods of course (then again, we have not been especially pleased with the quality of food here).  His “tasters” will be off for a few weeks so the interest in food is still not there – it is better than it was but if no food were presented to him he would probably be find with that. 

I think George would be okay with being here another night if not for the fact that I am so upset by this.  Time has just passed him by these past weeks and, though he is tired of being here he seems indifferent in some regards to having to be here another night.  Yes, he is disappointed, frustrated, etc. but honestly he is not as upset as I am.  Then again, he has lost all sense of time and does not remember much about the first ten days here.  The passage of time from one day to the next is not happening at a normal rate of speed for him. 

 I know I should be grateful for so many things… and I am… but today is yet another one of those days when the physical and emotional fatigue are outweighing everything else and caused by yet another delay.  I think this is the third time since we have been here that I have had a melt down – and I know that most would not judge me because of it given the pressures of the past few months.  These meltdowns make me feel selfish for wanting things to go “my way” when I have absolutely no control over the circumstances.  But I feel that my frustrations are valid ones especially when it comes to delays that are preventable.  It is not like we have never voiced our concerns or that we have left the premises so they can’t find us to take care of them. 

At any rate -  I am beyond tired of these walls.  Beyond tired of waiting and waiting and waiting for things to happen.  Tired of the pressure of being an advocate and having to push and prod to get any answers. Tired of tracking how many times George uses the bathroom.  Tired of waiting for the next delay, the next crisis. Physically, mentally and spiritually I am so drained right now.  When does it end?