Regarding Landon – a lot has happened since my last post. I spent much of the last week talking with the advanced care team, the attending physicians and various others reviewing Landon’s health the last 10 days. The crash on August 8th does appear to be related to his body’s handling of the wean, mostly driven by the fragile state of Landon’s systems. We examined the wean and the days leading up to it closely. I asked for information for his drip rates, as well as any bolus meds he was given. We looked at how things were administered, the rate at which meds were switched, and the pace at which he was weaned. I learned about WAT scores, and how to use Landon’s condition and his vitals to measure the impact the medicines (or lack thereof) were having on him. It’s been an educational week for me for sure! No one did anything “wrong”, I don’t want to imply that. Landon is just…complex…and has to be handled in his own unique way. We were all learning what that meant in this case. The team worked closely with me to come up with a much slower wean plan. We talked about how his thresholds are lower, his warning signs more subtle, and his changes sudden and unpredictable.
There was great teamwork involved and I felt heard and respected throughout.
I will spare you the details (but if you’re ever in a similar position I have tons more to add!) and just boil it down to a few high level points:
- Landon is fragile
- Landon responds easily to medicine changes, and his vitals can be volatile
- Taking certain medicines is hard on Landon
- Weaning off of certain medicines is hard on Landon
- All of this is hard on Landon
- Landon was in the care of one of the best team’s I’ve ever worked with, at a world renowned facility, and even still…
- Landon crashed, for two different reasons, twice in the last month and recovery was difficult. We got lucky that the arrest didn’t cause more obvious permanent damage.
- We don’t want to ask Landon to have to work so hard to come off of the breathing tube again.
- I promised him we would fight hard, but also that when the time came, we would listen and follow his lead.
With all of that in mind, I made a plea to allow Landon to come home on hospice. I felt sad requesting it, guilty at times, and was concerned the decision would be viewed as hopeless. Or as giving up. But I want to assure you we are still trying very hard. We made it home early Saturday and I’ve been busy ever since. I’ve devised tracking sheets at home, and am actively managing Landon’s care, along with his nurse, and along with a growing team who is available any time. We’re doing our best to manage his comfort, but also his health. A Doctor is visiting Friday to check in and talk about some potential positive changes we can try. I remain hopeful that Landon’s days are many, but even if they are not, he is where he needs to be.
If I had any doubts about whether or not this is the right path, they were immediately erased when we were able to get Landon safely in to his own bed. After a somber start to the home going, including low temps, heart rates, blood pressures, and respiratory rates, Landon had a brief moment where he was in a nice comfy middle ground, and this oh so special sight, told me he’s happy to be home.
Madonna Ormsby said:
I looked earlier today to see if there was a post. You are brave to make the decision you made. He will be much happier at home and so will you. You can both be with your family. Thankful that You have a team to help you as well as great doctors. I will pray for Landon to have many good days ahead. He will know he is loved!
Jan Hunn said:
Love that pic ❤️
You’re a wonderful mama.
Prayers for your boy.
Joyce Manson said:
Praying for sweet Landon and for you and your family.
Paula O’Brien said:
Such a wise decision and it shows in that happy face. You are a wise and loving mother.
GARY AND KAYE STRAWN said:
God Bless You and may God keep his loving arms around our special Landon! Our hearts, thoughts, and prayers are with all of you. We are walking this walk with you only far away.
Jeff & Mitzi said:
Praying for all of you, Melody! So glad Landon is at home with his family. I can tell from the picture he definitely knows where he is. Much love sent your way!!
Judith Cox said:
What a wonderful, loving, brave mama. That sweet, happy face must fill your heart to overflowing. Continued prayers for your incredible family.
Nancy Arnold said:
My prayers are constantly with you, Justin, Landon, Karson and Isabella and all of the families of Landon….May god bless you with peace, and a calming spirit…♥♥♥♥♥
Debbie Mcglone said:
What an amazing smile on Landon’s face. No question your decisions to bring Landon home was a good one for all of you. Prayers continue for Landon and your entire family.
Beverly J Uhler said:
Melody, you are a very strong, loving, woman. After viewing Landon’s pictures, I just know you made the right decision. Please do not doubt that. We pray for your entire family. All is in God’s loving hands.
Melody, you are such an amazing mom. It’s apparent that you have done everything you can for him and will continue to do so, and by the look on Landon’s face, home is where he wants to be. Prayers and hugs for Landon, you and everyone involved in his care. Love that sweet smile!!
Kimberely R Faw said:
God bless you, Landon, and your family. Praying for you all.
Peggy Buis said:
I feel you made the right decision to take him home. He needs to be with his family when possible. You are a great Mother!
Anita Eye said:
You are amazing and such loving and caring person! May God continue with all of you with this journey!!! No place like home and with the love and care you all give him he is in a great place!!! My prayers continue for all of you.
Sheila Blevins said:
Landon seems so happy to be home. May God continue to watch over and bless you all. You’re one of the strongest women I know. Continued prayers for Landon and all the Rinker and Cook families.
Praying for many happy days for all of you, with Landon surrounded by lots of love.
Shirley O'Dell said:
I have been praying for Landon and your entire family for a long time. He looks so much happier at home. Great decision. It sounds like you could write a medical book. May God continue to watch over you all.
You are such a wonderful mother! I pray for you and your family today and in the days to come. The pictures of Landon are so sweet! You can tell he’s so happy to be home. Know that you all surrounded by love and prayers.
Susan Jaeger said:
I am mesmerized by your story, your love and your steadfastness in caring for your loved one in such an amazing way. May God grant you many many “good” days ahead as his plan unfolds.