Hannah still is not comfortable. It sucks.
It is painful to watch when she gets really uncomfortable and agitated, Our hospice team is trying so hard to get her comfort manageable, but it seems none of the normal avenues work for her. Usually they use a lot of narcotics like Ativan, Versed, etc., but these have no effect on her. They have been reworking her regimen daily, and we have enough meds here to start our own pharmacy even though we only are using about 20% of them now!
Yesterday afternoon, out of desperation, I sent an email to Dr. Sanger at CHLA (the movement disorder specialist we saw in August) begging him for help in trying to get Hannah’s movements under control because they seem to be getting worse now. Yes, I begged. That is how desperate I was feeling.
Within 3 minutes, yes THREE minutes, I had an email response back from him saying he would contact Hannah’s hospice doc immediately to try and help. He also asked me to take some videos of Hannah’s movements so he could get an idea of what was going on. I was SO dang relieved!
This morning I got a text from Hannah’s hospice doc saying that she had discussions with both Dr. Sanger and Dr. Goker-Alpan from the NIH (who has been available 24/7 since Hannah has been hospitalized), and they came up with a brand new regimen of meds to try.
Apparently, one of the meds that we were using (Haldol) actually may increase her movement disorder even though it did seem to help cut down the agitation but made her more uncomfortable. They discontinued that and added Tegretol in place of the Haldol and increased her Klonopin. They also increased the morphine because we have yet to see any effect with it on her.
Hannah is on adult doses of everything. We are talking major doses here that could wipe you and me out. Her body is just sucking up all the meds and getting very little effect from it.
Since removing the Haldol today, Hannah actually slept 10 hours straight — she hasn’t done that in days! But when she did wake up, she was completely agitated and miserable. Daddy, who was up with her, said that there wasn’t even a moment of calm and he had to use the chloral within about 30 minutes of her waking up.
The pharmacy didn’t drop off the Tegretol until 10:30 pm tonight, so we will have to wait until tomorrow to see how this new regimen affects her.
There has got to be a way to give her some peace. There just has to be.
Dear all,
I just wanted to stop by and add my support in your journey. Having just come back after 2 weeks away I am astounded at the rate things have progressed. I hope that you have had time enough to process things. Keep looking for the light – and know that we are all here by your shoulders. Love, Ann
Prayers that this new regimen will bring her peace and comfort. Thank heaven for caring Dr.’s.
She has touched so many hearts is wonderful that all these medical professionals are working together to help make her comfortable.
I keep reading, I often just have no idea what to say. Keep on hanging in there.
Oh Carrie, my heart goes out to little Hannah. I hope your awesome caring docs can come up with a plan to help her be comfortable. I understand so much yet so little of what you are going through. I hope you guys feel the love and concern we all feel for your family. Big hugs to each of you
Praying for the right mix and peace for all of you.
Oh, Carrie, I just can’t imagine the pain you are going through for your darling Hannah. It’s wonderful that your docs are so responsive and caring. Prayers that you’ll get that balance of meds to work soon so she can sleep, have some quality awake time and you’ll feel some comfort for her.
Praying for little Hannah and for all of you (((hugs)))
We are praying for comfort for all of you. As you know, we had huge difficulty keeping Cooper sedated (for anything at all it took insane amounts of meds) and comfortable. I know that she can’t have certain meds, but I just wanted to through out what we used once we had Cooper home. he couldn’t tolerate ativan or versed, but for some reason, did just fine with valium. So he got high doses of that (20-40mg) every 2 hours. He had a dilaudid pump because morphine and fentinyl were like water to him. But even with the dilaudid, he needed a ton of it to make a dent. He got a set rate and then we could push the button every few minutes to bolus as needed. Cooper also got IV methadone in high doses every 4 hours (I think he ended at 40mg, but started at 10 or 12), around the clock zofran for nausea because a lot of the sedation meds cause upset stomach. He could have phenergan in between his zofran doses. We also had IV Hydrolazine on hand as well as benadryl. Sadly, I am certain I am leaving some things out. I am sure you have tried all of these, but I know when we were having trouble keeping Cooper comfortable, we reached out to other families who had walked the same path to see what they could suggest. We love you guys tons. I pray that you are finding new ways to connect with your sweet girl!
Sarah