I have never been so relieved and excited as I did when the medical transport team carrying Hannah and I drove up to our house to take us home. I couldn’t get out of the van fast enough to get the door open.
I needed Hannah to be home, and now she is here. Finally.
But it comes with so much guilt. Hannah had a great morning, and I had a good 2-1/2 hours of quality time with her before the agitation started up again. The hospice had a spiritual massage therapist and a traditional massage therapist working on Hannah at that point, and we were able to get her another good hour before we had to give her the chloral to sedate her. The smell of lavendar-chamomile massage lotion permeating her body was just wonderful.
We had a 4-hour wait at that point until the medical transport team was to come and take us home.
An hour before that point, Hannah woke up again. As much as I was thrilled she was up, I was nervous too. We were supposed to leave in an hour…her seatbelted to a gurney. My child who does not do well with car rides in the first place, then add the possible agitation from her disease as well as the agitation from mommy not picking her up when she is tied down…it really stressed me out.
We had the authorization to give Hannah the chloral every 4 hours, but really we don’t want to ever have to use it that quick because it just isn’t really safe, although it is do-able (usually, every 6 hours is our max).
But as the med transport team showed up (4-1/2 hours after her last chloral dose), the nurse could tell I was stressing out about it. How the hell am I going to get her home safely? I was so worried about her getting agitated in the van because she had already been up an hour plus having the transport team need to pull over every time I would need to suction her (their rules) which would be quite often since when she does have an agitation episode, her secretions go on overload because of her swallowing difficulty.
Feeling horribly guilty but torn, I went ahead and gave her another chloral dose to get her home safely. It killed me to make that decision. I kept thinking, what if this is the dose that just shuts her down?!
We did get home safely…8 hours ago. She is still completely knocked out and has to wake up or even move her body from when we put her down.
I just need her to wake up soon so I know that the decision I made to sedate her to get her home safely was the right one. I’m really wracking myself with guilt right now for doing that to her.
Dear Carrie ~ I’m sure you did the right thing for Hannah. You’ve had such horribly difficult decisions and you have made them with such unbelievable Mommy compassion. Maybe this is the way she’ll get the rest she needs to enjoy your cuddles and lovin’ when she awakes. I pray you can get some rest as well.
God’s blessings to your family,
Ginger
So happy your precious little girl is home with you. Hoping for peace and lots of smiles 🙂
XXX
So glad that you are home. Please don’t second guess yourself, or beat yourself up. Love you!
So glad you’re both home! Get some sleep yourself and try not to let the guilt get you…it’s the last thing anyone needs right now (especially you sweetie)
Carrie – how is she doing today? awake?
Carrie,
I don’t know that I have ever contacted you directly, but I have been following Hannah’s story for over two years. I have been thinking of your family and sending all the healing and love I can come up with your way. You are all on my mind every day.
The decision you made spared Hannah a very miserable and terrible trip home. Instead, she is coming home in quiet and comfort and is resting. In a field of terrible decisions you have had to make, you have always made the right ones for her. You are a wonderful mom. She is loved and loved and loved and surrounded by love and no matter what happens she knows that. It’s so clear in her smile that she feels that.
I continue to think of you and she and your husband and your other baby boy and baby girl.
xoxo
Krissy
Carrie-My heart breaks thinking about the decisions you have had to make and the decisions you will have to make going forward. It is wonderful that you have so much love and support around Hannah and your family. That was the one thing that helped get us through all of this with Ethan. Spend every moment you can with her and don’t have a single ounce of guilt about anything. You know what’s best for your little angel and nobody can love her as much as you and Robert do. You are always in our thoughts and our hearts ache with you. Keep strong and you’ll make it through this. With love and understanding-Tina
Carrie,
Dont feel guilty you have to know you are doing whats best for Hannah and you obviously did the right thing. Most important is now she is home where you and Bobby want her to be and I am sure she is also happy to be back home.
Just continue to love her and spend as much of her awake time with her as you can. Also try and get as much rest as you can, your health is important.
Stay strong my love. Our prayers and thoughts are with you every moment of the day.
Love you all and hugs to Hannah, Ehan and Abby.
Susan
I agree- no guilt. You are doing the very best thing you can do, and making the very best decisions you can. Please don’t second guess yourself at any time in this journey. Hugs!!!
so many prayers for you all!! Please try to not linger in the guilt. You are making the best decisions you can in the moment. So stay in the moment, rest and try to be at peace. So many of us are here for you!!
I’m so glad she is home with you all. I hope you’ve had amazing cuddle time today. All your decisions come from love so please do not allow guilt to enter into this precious time.
Carrie, oh Carrie. I have been in similar shoes. Please do not hesitate to contact me. Making the decision to let Gage go was…unimaginable. At the same time, we as parents sometimes have to make decisions for our children that will hurt us, but help them. I feel for your family…you and Robert, your other children. I have been there. I will be happy to listen…anytime. Even if it’s months from now, I am here for you. I have felt a connection to you for a couple of years now because of all your hard work in the rare disease community. Please know I think of you every single day. Much love.
Carrie you are a good mommy. You made the best decision to get her home. remember that. She’s home.
ps i would love to come for a visist!