On her first day at the hospice, Hannah fell asleep in the airbed setup for mommy and daddy. No wires, no leads, no docs poking or proding her, no xrays, nothing but peace and comfort.
After Daddy and I made our decision on how to treat Hannah’s care from this point out since she is now considered “end stage,” we decided to just bring her home and spend the rest of her time with us.
It was really important to me to have her home so we can just give her love all the time.
But our biggest concern was how to tell the kids. I mean, huge stress. I mean, they are going to live with this situation for the rest of their lives. It is going to affect them terribly because they just love her so much. I mean, they are going to lose their little sister! So not fair!
I ended up calling a pediatric hospice group that listed pediatric counseling on their website. Just for guidance on how to handle telling the kids — at what point? where? how? I ended up breaking down talking to the nurse coordinator, and she dropped everything and came to the hospital to talk to us.
I knew of hospice because of the families I know who have been in this situation, but I really didn’t understand what it entailed. I just thought it was like extra nursing care, but it is so much more comprehensive than that.
Later that afternoon, we asked for their team to come talk to us to learn more. It helped tremendously that our friends’ mom was part of that team and worked at this hospice. The counseling services for not only the kids but us, having a team take over coordinating all of Hannah’s care (nursing, appts, meds, etc.), and having someone who will work to do whatever it takes med-wise to make Hannah comfortable at all times.
Once we decided to forgo the brain coma and the neurosurgery consult, it seemed like a no-brainer at that point.
So from that point on, our main goal for Hannah was “comfort care.”
We transferred her to the Nathan Adelson Hospice on Friday, which has been an amazing blessing in disguise. Since they focus on quality of life and not recovery and ‘fixing things,’ it has been a 24/7 process coming up with the right med combination to keep Hannah’s agitation under control but also try and give us some quality time where she is awake and aware but not in any pain or uncomfortable. They are also working with us to change her feeds over to the 1.5 cal/mL (instead of the regular 1 cal/mL) so that she can have less volume and more calories.
The problem we are realizing is that Hannah is metabolizing these drugs so fast that they are not lasting as long as they did just a day or two before so she is requiring more. Right now, we are working with the phenobarb and the chloral hydrate (her miracle drug, works so quick, but is not lasting as long because we are using it more). The goal is to get the phenobarb to a good level so that we don’t require as much chloral but can use it when we need to. We know that versed, ativan, and fentanyl don’t work for her – very little affect – so those are out of the equation.
The hospice group is also going to work to put everything in place so we can just go home and ‘be.’ They are coordinating all her meds, supplies, and nursing assistance and even working on getting Hannah’s cerezyme treatments done at home. Also, our nursing company is working to increase our hours to 80 a week (from 56), which will definitely help.
Our goal is to get Hannah home on Tuesday where she can spend the rest of the time just being loved and cuddled 24/7.
You and Robert made a very selfless decision to let your princess warrior rest from the battle. Love and prayers.
While I wish we didn’t have a need for services like Hospice, I have myself seen first hand what a precious gift they can provide. Peace for your Hannah and love and togetherness for all of you.
Hospice workers are truly angels here on earth. My thoughts and prayers are with all-my prayer is that you enjoy every precious moment with Hannah to the fullest and that you will find comfort yourselves in being at home.
Praying for all of you.
Everything I have ever been told about Hospice care, is that the people who work there are angels…and I am so thankful for the support they are giving you now. It’s overwhelming how much you have coordinated and handled up until this point, and it must be such a relief to turn over the responsibility to people whose priority is to make your baby comfortable and pain free and also give much needed support to your beautiful family. I am so thankful Hannah with be home, and comfortable and surrounded by nothing but love and snuggles. Carrie, you and Robert continue to be in my prayers and in my thoughts.
It sounds like you have a really good plan in place to support your family during this time. I am immensely proud to “know” you and I wish you all the comfort in the world at the end of your family’s battle with this horrile disease.
I’m glad hospice is able to be such a help to y’all, and glad Hannah will be home where y’all can just love on her. I’m praying for her to be free of pain and to just know the love of her family, and for peace for all of you.
I have been a Lutheran pastor for 27 years (medically retired now). For five years I have lived in Las Vegas. I witnessed the terrific Nathan Adelson program for the first time 3+ years ago and was amazed. From what you describe it sounds as if you are experiencing their blessing at this terrible time in your family’s life. I will continue to hold you all in prayer as I have done for a long, long time.
Carolyn (in Las Vegas)
Hospice was a wonderful help to us with both of my parents. Everything is designed to make the rest of life easier on the patient — and the family. I’m glad you are in good hands now.
Hospice can make all the difference. I wonder why her docs didn’t suggest it. I hope your time with Hannah is as peaceful as can be,
My experience with hospice was also incredibly special and positive at an otherwise incredibly painful time of my life when I was providing home hospice to a very dear young friend. Bless all of you during this part of your journey. You are in my thoughts constantly, and I think so many of us would also love to hug your beautiful little girl along with your whole family.
I know Jesus is there with Hannah and also with you guys, please be comforted in this! As a parent I know I would do anything for my children and grandbabies but you guys are the real thing in action! Your unconditional sacrifices to care and love for Hannah is truely God’s heart here on earth.
May Gods bless you and keep you close to Him at this diffacult time and in days to come!!
Hugs and prayers for all of you during this difficult time. So glad such a great hospice team is there to work with you.
I am glad you are such great help who can take some stress from you.
When my stepdad came home from the hospital mostly unresponsive due to Encephalopathy, hospice was there for us. They talked to us, helped us deal with the inevitable and made our journey with Pop the best it could be at the time. They are angels on earth.
This is a hard journey to make but I will pray that it will filled with love and peace and a gentle walk. I will pray for Hannah and your family every morning and evening.
Prayers going up for the entire family. Many hugs to miss hannah. I too remember the love and blessings the hospice team can bring. Remember, there are many people praying for you all during this time and forever more.
I just recently started to follow your blog/website on Hannah’s life journeys.
I actually work for the Company (genzyme) that produces cerezyme. So the stories you have told are sooo extremely touching.
I cant event begin to imagine what you have gone through. I know how lucky she is to have parents like you to go through this.
I will keep you in my prayers and thoughts during the rest of your journey.
There are no words. I’m so sorry you and Robert are going through something no parent should have to go through. Hannah is just beautiful and you have been exactly the parents she needs.
I am so sorry for what you are going through right now. Please know that you all are still in my prayers and will continue to be.
I came over from Connor’s Song. Please accept my wishes for your strength and comfort during this difficult ordeal. I’m glad hospice is able to provide comprehensive support for your entire family, and I hope Hannah is comfortable. I’m sure she feels your love all around her.
Carrie,
You and Bobby are making all the right decisions for Hannah. She needs to be surrounded by all her things, the comfort of her own home and the love she will have around her. Hannah is so lucky to have parents like you both. If she could tell you she would be saying “Thank you mommy and daddy for all you have done for me and that its ok to let go”. I know that this is an extremely difficult time for you all. Just remember you are in our thoughts and prayers all thetime.
Love you all and big hugs to Hannah.
Dear Ones,
My heart is just unspeakable. I’m so terribly sad for the anguish you all are going through. Your decisions are so sensitive for precious Hannah as well as each of you.
God’s tenderness as you pass through this chapter in your lives. What a blessing Hannah is to you and you are to her. You have all touched my life.
Prayerfully,
Ginger
I’m also here from Connor’s Song. I really don’t know what to say but I hope this much is ok: I’m sad things have come to this, glad you have good support, and my thoughts will be with you and all of your kids.
Wow Carrie, I don’t know what to say. You have great strength and God bless little Hannah and all your family.