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One step forward, two steps backwards…far backwards

Posted Nov 04 2011 2:00am

I feel like I am living a nightmare right now.

It has come to the point now that I dread seeing Hannah start to wake up because she most likely will wake up uncomfortable, her movements going uncontrollably, and most of all, seeing her writhe in pain from whatever is causing the pain.

We have made a lot of changes to her med regimen in the past few days including phasing out the scheduled phenobarb, adding valium and morphine, and increasing her klonopin, benedryl, and baclofen among more than I can’t think of off the top of my head.

When we added the valium and increased morphine yesterday, she actually fell asleep for 13 hours!  Her average over the past few days before that had been about 2 hours at a time with very, very little calm and quiet time in between (although she seemed to have some calm awake time for about 2 hours a day a few days before that but she quickly gained a tolerance to the meds that allowed that).   It had become a race to get to that 4-hour mark when we could give her the chloral hydrate again and knock her out.

Oh, and have I mentioned that the chloral hydrate is starting to not be as effective anymore?   Twice now in the past 36 hours we have used it and it did NOT even work.  Hell, a living hell.

She is so miserable, drugged up, and I’m not even sure how much she is even aware anymore.  We aren’t sure if she can see us anymore, we know she can hear some things but what she can understand is unclear.

What kills me the most is that cuddling her now gives her more discomfort, and she would rather be lying down untouched.  Her hospice nurse thinks that she has developed some pain to the tactile stimulation that holding her brings.  KILLS me.  At least she will let us lie next to her, caress her, and massage her.

All I want to do is comfort her.  That is my role as a mom.  At this point in her disease, I feel like all I can offer her is showing her comfort and love.  Yet, holding her makes her uncomfortable.

I look at the pharmacy we have accumulated over the past two weeks.  Massive doses that would knock me on the floor, they barely touch her.  And yet, I am so damn afraid of even going one-tenth of a milligram more than that doctors prescribed for fear that I may cause more harm to her.

Then this afternoon, she started having problems with her oxygen saturation.  She started dipping into the mid 80s.  Obviously a result of all the tranquilizing meds trying to calm her comfortable.  But we broke out the oxygen this afternoon for the first time in a LONG time.    Even on a 10L oxygen level (not direct, just into the area around her trach), she only got up to 95 or 96 (100 is best).

I was exhausted when Daddy got home from work in the afternoon, and I was ready to crash since I hadn’t had much sleep in the past three days because of his work schedule.  I was lying in bed with the door closed, and then I kept hearing the pulse ox alarm keep going off because her O2 was dropping under 92 a lot…with the oxygen.

I just started crying.  I heard Daddy, Hannah’s nurse, and the hospice massage therapist out there, and I just walked out of my bedroom and turned off the pulse ox.  I said to them, “why are we doing this?  We already know what is going on.  Just keep the oxygen on her, and leave the machine off.”   I didn’t even allow for a discussion of it.  I just turned it off and walked back into my bedroom, closed the door, and I start bawling.

This is a nightmare.  Hannah is caught in this horrible nightmare.   This is hell.

There have been many times that I think that maybe someone has made a mistake.  That maybe if we stop all the meds that she would go back to where she was two months ago and that this is all a bad dream.  That maybe we are causing more harm than good with these meds at this point?

But then I go back to the brain MRI.   The one with the “tremendous” amount of white matter loss.  I go back to what her nurses have said since we went into hospice, how they had seen a lot more uncomfortableness and agitation over the two months before we started this last round of hospitalization.

Right now, Hannah is asleep.  Knocked out with a boatload of meds.  Yet, I find myself relieved because her body is at peace right now.

But I am so sad for her.   She deserves peace, cuddles, and oh so much love.  Yet, this disease does nothing but destroy all of that.

And guess who is already staring to walk up … just 2 hours after a crapload of tranquilizers…damn!

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