Balancing Medications

Even though I know our overall decision to keep Hannah ‘comfortable’  is the right one, I find myself constantly actively reminding myself of this when she is asleep most of the day under sedation.   She is so peaceful, so angelic looking.  I love to snuggle with her, caress her face, brush her hair with my hands.  Her smell.  I am constantly in love every time I look at her.

It kills me that we are running out of time.

I had about 30 minutes of awake time today, earlier this morning.  I was cuddling and singing to her, and she smiled back at me like she usually did when I sang those songs!  It was awesome.   It gave me hope that we have the ability to have more good times with her ahead.

I thought, maybe she has more fight in her and we shouldn’t give up on her?

But that was short lived.  The agitation started again, just two hours after her chloral hydrate dose, our magic drug, because of a previous uncontrollable agitation episode.  It didn’t make any sense since we have been able to get at least 4 to 7 hours in between these doses.   We were working on building up the phenobarb in her system, but it wasn’t there just yet.  We couldn’t give her the chloral again until two hours later.

It was hell.  Pure hell.  She was in so much agony, you could see it in her face.  Watching her writhe back and forth, seriously as if she was trying to crawl out of her skin.  It killed her daddy and I watching her.

After talking to Hannah’s two soul-sister mommies (Addy and Olivia) the night before on what meds they were on, I saw the common denominator between the three girls – phenobarb, which Hannah was currently on, and baclofen (for muscle spasms).  We had tried a quick dose of baclofen the day before, but didn’t see much results initially – but in fairness, we didn’t really give it enough time because we had to give her the chloral to sedate her.

The big question was — is she getting muscle spasms which are leading to agitation or is the agitation so great that her muscles are starting to spasm?  With the baclofen, if we could decrease the muscle tightness/spasms, would it help the agitation or even the muscle tightness?

Our amazing nurse coordinator talked to the doctor, and he agreed to let us try baclofen again but on a 3 times a day basis instead of a quick shot dose.   Also, our doctor wanted to try haldol on her, the same drug we tried almost a year ago for her movement disorder with no luck, to see if it would help the agitation.

About an hour before we were able to give the chloral again, they gave Hannah the baclofen and an addition shot of phenobarb about 15 minutes later.  Within about 30 minutes, we noticed that Hannah was still really agitated BUT, and this is a big BUT, her muscles were no longer tight and clenching!    She was clearly still upset and agitation, but it was more of a relaxed agitation.   We were thrilled!

About 15 minutes before we were able to give our magic chloral dose, our fantastic nurse grabbed the chloral so as soon as that minute hit, we could give it.

But then 10 minutes before we were able to give it, we noticed Hannah trying to fall asleep.  Daddy, the nurse, and I were like, “Is this really happening?  Is she really calming down on her own?”

You have to understand, not once has Hannah EVER been able to get out of an agitation episode without chloral hydrate.   And we have had dozens of these horrific episodes.

Two minutes before we were able to give Hannah the chloral hydrate, the nurse walked in the room with the syringe.  Hannah fell asleep.

Did you hear me?  Hannah fell asleep!  On her own!   Without chloral hydrate!

What does this mean?   Perhaps the additional of the baclofen, which clearly caused her to relax her muscles during these episodes, as well as the additional shot dose of the phenobarb are working their way up to place where they are useful.   As a result, it was decided to definitely keep the baclofen 3 times a day as well as bump the phenobarb from 2 times a day to 3 times a day.

But we are still trying to figure out what works best.  As a result of all of this, she has been asleep the 6 hours since.

I miss having my awake time.  But I have to keep reminding myself that this is where we are.  I would rather have her sleeping and comfortable 24 hours a day than have her experience even 1 minute of those agitation spells.

But I miss my smiles.   I miss seeing her eyes gazing at me, knowing how much I love her.  Argh!   It just destroys me that there is a chance I may not get to see those beautiful big brown eyes lovingly looking at me again.