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!
I am praying for Hannah’s comfort and for your breaking heart.
Sending love and hugs and hope that Hannah and you and your family receive much needed comfort. Love and miss you hon
Hang in there Carrie. I am so sorry you have to go through this. There are many of us out here who think of you constantly…may all our good thoughts for you bring you strength.
I’m so sorry, hugs and prayers for Hannah’s comfort and your strength.
No words to ease your anguish. Sending up prayers.
Oh hon this part is the worst! Emma went thru the same! Idk what chloro is can ya tell me?
You can’t go back sweetheart! Ya gotta push fwd! At this point her little body is burning thru those meds! But you can’t not up them now. The dr’s and you I’m sure, want her comfortable as much as she can be! Whether it’s lots of pain meds or not. I had a hard time with that too but then if we missed or were late on a dose I’d see how much pain and how she struggled and moaned and I couldn’t stand that! Don’t worry also about cuddling. I know you want to be her mommy right now and not her nurse (luckily you have nurse help I did it alone with a toddler lol) but they are more comfy when they can stretch out their little bodies or curl up whatever way they can get as comfortable as they can!
My heart goes out to you and Hannah! I wish I could do something to ease your pain! If you EVER want to talk PM me your number! I’m always here for you!
J
It is so not fair, Carrie, that you can’t even comfort your own child. I hate this so much for her!! I am continuing to pray, as are so many others.
Sending prayers.
Add me to the list of praying friends. I just wish there was something more…
oh my sweet friend. I pray that she is unaware, that this hell you are in will ease, and there are no words of comfort which will make it better. I will pray and pray and pray.
My heart is breaking for you. Wishing you lots of love.
I keep typing and then deleting… there’s just no way to convey just how much I wish this wasn’t happening. I pray Hannah is resting peacefully and pain free, and that you’re able to get some rest yourself today.
Carrie, I am just so sorry this is happening to her. I know the heartache of them having to pump Gage full of Ativan and Morphine just for me to touch him. I am sorry you are having to go through this unbearable pain. I wish so badly that Hannah could get comfortable.
I just want to tell you that I love you and think of all of you every day! I wish there was something I could do to ease your pain.
My heart goes out to you & Hannah! prayers for your family
Praying for you and your family.
I do not know you nor do I know Hannah. After reading this, I wish I did. My heart goes out to you and your family, and especially sweet, little Hannah. I know there are no words to comfort you all or to make any of this any easier for anyone involved. I pray that God wrap His amazing, comforting arms around Hannah and give her a peace and comfort that no human could possibly imagine. I also pray for God to hold you all close to Him and give you a comfort, peace and strength (although, I know you already have tons, as this is a daily struggle for you all). I will keep you all in my prayers. Please know that although I may not know you, I (spiritually) wrap my arms around you to give you comfort and encouragement. May the Lord be with you all~
Carrie, Your words are powerful, and I remain in admiration that you can form sentences under the stress you are under. I hope the love and caring of so many somehow makes it to you to help you through these painful days. Many prayers from Rudy and me.
Carrie,
My heart is just breaking for all of you right now. I am so sorry for all the pain you are going through and I wish I could just take it away. No one should ever have to go through all this.
I am so very sorry and all I can do is pray for you and ask God to give you the strenght and ask God to please put his arms around all of you especially Hannah and to please take away all this pain suffering and sadness.
Our thoughts and prayers are always with you. Hug Hannah for us please.
Susan
Carrie is she on a long acting pain releiver in addition to the short acting morphine? This may help keep her pain from going up and down in peaks and valleys – some options are fentanyl patches, butrans patch, avinza, etc (avinza would have to be compounded)… Just a thought. Many prayers..