When we sat down with Hannah’s doctors a couple of days ago after her neuro, intensivist, and NIH pediatrician all concluded this was likely “end stage” of her disease, we were forced to make decisions on what to do next.
It took them 4 days, but they finally got a drug combination that sedated her enough and kept her body calm. It has been an absolutely stressful nightmare until that point, and when she finally was out for more than an hour, I felt a huge sigh of relief. They tried Ativan, Fentanyl, Versed, Precedex, and even Morphine to try and calm her agitation. Even a Versed drip wasn’t any help at all.
Finally, it was a combination of chloral hydrate and phenobarbital that did the trick.
I think the 24 hours that followed that meeting with our hospital intensivist were the worst 24 hours in my life. I mean we always knew that this time would have to come at some point, but I just thought it was more “in the future.” To have it staring at us in the face, talking about “end stage” and “Hannah” in the same sentence just kills me. I don’t think my husband and I have ever cried so much.
We were faced with the only two options of meeting with neurosurgery in hopes that Hannah had a very rare case of hydrocephalus ex vacuo (brain atrophy with spinal fluid filling the space) that caused pressure on her brain (usually they don’t). In that case, the treatment would be drilling a hole in her brain to let out some of the fluid.
The other option that was available to us was to put her in a medically induced coma with pentobarb. Basically, flatline her brain for 24-hours in order try and ‘kick start’ her brain in hopes that the agitation, etc., would disappear.
Both of these options had tremendous risks, pain, and possible death involved with them. Both of these options were very unlikely to help, very slim change for either to work.
We decided to leave Hannah alone and have no more intensive invasive treatments. That was the first of our many decisions that followed.
Daddy ended up having to take the rest of the week off of work because we were just both such a mess. It was even harder because we both had to keep a ‘normal face’ in front of Ethan and Abigail because we didn’t have a plan for them yet.
We had to figure out what to do. We already agreed that we didn’t want to subject Hannah to any further invasive attempts if there wasn’t a reasonable chance of success.
But then we were faced with the advanced directive question. This was such a horrible thing to have to discuss. I mean we knew we would have to talk about it at some point but it was so damn hard to start that conversation and really share what each of us thought.
But we were both on the same page. We decided to put her in DNR code – Do Not Resuscitate. No CPR, no advanced cardiac life support (such as epinephrine), and no vents.
When Hannah is ready to let go, we are going to let her go in peace. As much as I want to keep her here with us, it can’t be because I am forcing her. I don’t want her to be in pain, I don’t want her to suffer, and I don’t want her to be forced on a machine just so I can have another hug.
Happy and pain-free. That is what we have always wanted for her. I feel like we are failing in that right now, and I know that keeping her around when her body is ready to let go is just me being selfish.
God, it kills me to even think that we are going to lose her.
Hugs and prayer. I am so sorry you have to make these hard choices for Hannah.
You are all in my prayers. I’m glad you were able to stop her agitation.
Oh Carrie. I am so sorry. James and I were just reading your post and we both thought that you and Robert are doing the right thing – the best thing for your little girl. Please know that we are thinking about you in this terrible time.
You are heavy in my thoughts.
many hugs and prayers Carrie for sweet Hannah
Robert & Carrie,
Parents are used to putting our children’s needs above our own. But it takes a great strength and faith to walk the road you are on. Focus on the love, and the gifts she has brought into your lives. Focus on the positive impact she’s made on the lives of Ethan and Abigail. Holding you close in my heart!
Hug Hannah for me please! My heart is just aching!
Susan
I just heard about Hannah…I have a friend who lost her baby to Gaucher’s, so I am somewht familiar with this horrible diease….my heart aches for you. Your love for your daughter & determination to do what is best for HER come thru your words so pwerfully…you are all in my prayers
Michelle Caez
You are constantly in my thoughts and prayers. I wish I were there in person to hug you tightly.
Oh Carrie!
Our prayers and thoughts are with you. There are no words for what you are going through. We lost our 4 year old son 10 months ago and understand having to let go. God bless Hannah and all of you.
You don’t know me but somebody on my friends list posted this and I just wanted to say that you, hannah & your family are in my thoughts and prayers, I could only imagine what your going through and It breaks my heart that anyone would have to make such decisions. I hope you all find peace
Tnere is nothing I can say that would help. Just know that my prayers are with you snd your family. I wish there was something I could do to help…. Hugs to Little Miss Hannah and you all.
Oh, Carrie. I wish you all support and love right now. I hope you find peace in the decisions that have to be made and may God lead you to what is best for Hannah. There are no words, but I certainly do wish you all much love and hugs at a very difficult time. My heart breaks to hear of this news.
Carrie, I am weeping for y’all right now. I have said it so many times but y’all are such amazing advocates for Hannah in every area. As a parent I can’t even begin to say that I understand the depth of emotion that y’all are going through. I have the most amazing memories of all of my sweet Ostreas that I hold so close to my heart. I am just heart sick! We are praying for y’all and thinking about the entire situation constantly. Please know that y’all are so loved. Please give her a big kiss and hug from me. I just love her so.
Hugs and kisses,
Jenny
My heart breaks for you Carrie. I am praying for you and your beautiful family.
Carrie I have no words. You and Hannah will be in our prayers.
Happy and pain free….. (((hugs)))
Carrie, I’ve followed your blog and thought about Hannah so often ever since I met you online via the trach board and sent you the trach ties. I have no words- I don’t think there are any words that could possible comfort you and your family right now. But you and Hannah have touched the lives of people who’ve not even been blessed to see Hannah’s beautiful face. I will continue to hold Hannah, you, and your family in prayer.
Love, Shaquita
Carrie, thank you for sharing with us all the story of Little Miss Hannah. I’ve been reading your blog since you started it and I have followed your brave, painful, life moving journey throughout the past three years. The love you have for your daughter, the strength you’ve had throughout and the courage you have to handle all that life is throwing at you is just amazing. You have touched many lives with your honesty.
Dear Carrie.. I have been following your precious Hannah’s story for over 2 years now and have come to really care for her and your family. This feels so sudden!! I have no words for you other than to say be strong and know that you are not alone. Sending love from South Africa. Cathy and Bella