Hannah’s breathing has become more labored and shallow I have noticed. Even with the oxygen in her trach humidifier going, her oxygen saturation only goes up to the upper 80s, very low 90s. Without it, she is in the low 70s.
She is also starting to not tolerate her feeds anymore. Her belly is getting distended within a half of a day now, and we are downing the miralax and prune/apple juice. We had to give her an enema tonight to get her some relief, and even that took 35 minutes to work. I’m sure it partly has to do with her meds because she is on so many tranquilizer types of drugs, but I have to wonder if her body is just too tired now.
I hate seeing her suffer like this. But if she keeps fighting to stay with us, then I will keep fighting right along with her. I will do whatever it takes to keep her comfortable and be able to smother her with caresses, kisses, and love for those moments she is awake.
One of the tools that the hospice gave us to help her with her agitation was this amazing lavender cream that also has a hint of orange and lemon in it.
Hannah woke up about 30 minutes ago, slightly agitated but definitely showing some pain. So I gave her scheduled meds with her as-needed dose of methadone and benedryl to hopefully lull her back to sleep.
While I was waiting for the meds to kick in, I massaged Hannah with this cream. I absolutely LOVE doing this, and I can tell that she responds very positively to the massage. From head to toe, she gets a full body massage. The smell is fantastic, and I take my time working it in to almost every part of her body. She fell asleep during my massage (I’m sure with the help of the meds), and it gave me a sense of relief that we were able to bypass another use of chloral (which was used 5 hrs earlier).
I was never a fan of aromatherapy before, but after seeing how well Hannah responds to the lavender, I am a huge fan now. I have to find time to go out and by a whole slew of lavender for her – candles, soap, bath stuff, etc. My friend Heather got me some lavender extract to put into a spritz bottle so I can put some of it around her bed.
She has such a good response to the smell of the lavender, how can I not do whatever I can to get it for her? I feel like there is at least something I can do to help make her feel more comfortable, however little it may be.
She is asleep now. Her body is calm and peaceful finally. She is hooked up to her oxygen and feeds and smells like lavender, but she is asleep.
I will love lavender forever…
Carrie..lavender is wonderful, probably my favorite smell ever. I keep checking your blog, just to see how it’s going. Thinking of Hannah often.
So glad you have a way to comfort your precious girl! Some cuddly lavender headed your way!
Carrie, I have been suffering right along with you. My prayers are with you all!!
I know this is probably not a good thing to say, but I have to mention it…Have you told Hannah that it’s okay for her to go home to God whenever she’s ready, that you’ll be okay without her, that she doesn’t have to fight and suffer anymore just for your sake? Perhaps she’s just waiting for you to say it’s okay for her to go. I know it’s never going to be okay, I know that, because I lost my baby to the same awful disease. But I used to tell Kyle that I didn’t want him to stay and suffer just for me, that he could go to God whenever he was ready, that I would be okay. I know that’s morbid, but I believe with my whole heart and soul that sometimes the dying hang on just for our sake.
I’m so sorry I had to say this 🙁
There’s a Whole Foods at the south end of the strip just past the airport that has a wonderful assortment of natural remedies with Lavender. Soaps, creams, the whole 9 yards. If you can get over there, you can load up. If you have a Sprouts/Henry’s market they have good stuff too.
I get scared to open each new posting, because I’m afraid we will have to say goodbye to Hannah. I know you are scared about the transition from this life for Hannah, but as the Psalmist says in Psalm 23, even though Hannah walks through this dark valley, she will fear no evil as the rod and staff of the shepherd is with her and she will dwell in the house of the Lord forever. The Psalmist promises you that.
I continue to pray for you and your family as this journey continues.
In peace.
Ann
Psalm 23
A Psalm of David.
1 The Lord is my shepherd, I shall not want.
2 He makes me lie down in green pastures;
he leads me beside still waters;*
3 he restores my soul.*
He leads me in right paths*
for his name’s sake.
4 Even though I walk through the darkest valley,*
I fear no evil;
for you are with me;
your rod and your staff—
they comfort me.
5 You prepare a table before me
in the presence of my enemies;
you anoint my head with oil;
my cup overflows.
6 Surely* goodness and mercy* shall follow me
all the days of my life,
and I shall dwell in the house of the Lord
my whole life long.*
I might have to try the lavender thing with V when she gets agitated. I am glad you are finding some relief amoung the sadness and stress that must be over taking your life right now. Just an additional thought because I know it became an issue with V after being in bed this long, you might consider a satin pillow case so her hair doesn’t get knotted. I know hair knots are no big deal in the grand scheme of things but, at least for me it was something I could control.
I am still praying for your precious baby girl and I pray for you as well that god will give you the patience and the strength that you need during this time in your life,may god be with you and your family.