Two days ago a new-to-us Nurse Practitioner named Sara came to our room with the doctors on rounds. In order for us to leave the hospital there were many things that needed to be done and Sara finally turned and made a list on the white board in our room. My heart warmed. My eyes teared. THIS is a woman after my own heart!
We’ve been working our way through that list ever since and are now one check away from discharge!
So, we’ve done all we can do on this front and it’s in the hands of the transplant team. It has been decided that a transplant is the only procedural option and there’s a letter that makes it official (excerpt above). They have communicated with our insurance and the only thing left is a meeting on Monday amongst the Transplant Team to review the big picture of who we are and to discuss if they think we qualify as viable candidates for the process. Once they decide we are, our names will be sent to UNOS (United Network of Organ Sharing) and the official waiting begins.
GET PICC – She did. It has been hurting a good bit so prayers would be welcome for it to calm down and ease up.
HOME CARE – We will have two home care companies helping us during this waiting period. One company handles the medication prep and delivery and the other will provide a nurse to come change her dressing once a week. Everything is lined up and a rep from the drug company should be here tomorrow to transfer Little from the hospital’s medication to a pump we will take home with us.
PAIN CONTROL – For most of her life it has seemed that Little felt no pain.
Bit through her tongue at age two. . . no Tylenol, no tears.
Broke her humerus at age ten . . . no Tylenol, few tears.
Four teeth pulled at age twelve … no Tylenol, no tears.
Well, this pacemaker procedure has been giving her fits … if we have no Tylenol then we have tears. They have finally settled on a dosage and are staying ahead of her pain (for the most part).
EP CLEARANCE – The Electro-Physiology Team has to give us an “all clear” before we can go home. This team includes the doctors who put in the pacemaker and are monitoring her heart rhythms AND the pacemaker duo so loving written about in my earlier posts. Little has responded well to her medications and the arrhythmias seem to be controlled. The main thing holding us up at this point is her pacemaker wound. Because she was on blood thinners, it seems a nice pool of blood has gathered under the device and the pressure is pushing “Melinda” up against the incision. (Yes, we named her pacemaker.) They have stopped the blood thinner and are watching; there’s concern about infection. The color of the bruise (Frank) on her arm seems to indicate that things are moving in the right direction (yellow=healing) but the team will unwrap it and check it today.
CVC CLASS – Yesterday I went to a class where I learned how to care for Little’s PICC line. The class involved 4 YouTube videos and practicing on a plastic arm. Later in the day they brought a baby doll with a PICC line by the room for me to demonstrate how much I remembered. My only mistake was to clean a piece I didn’t have to clean but we decided to call it “forward failing.”
Tomorrow will be two weeks that we have been here. It’s too long. We are tired and Little needs sunlight. It’s Bubba and KB’s last day of school and I HATE to be missing it. Jeremy took pics for me, which is wonderful, but I will miss the first day at the pool and the annual “Ice Cream Summer Kick-off” (a trip to Sonic).
But my friend Erika drove up today and it was a short but lovely visit! A friend from church came to sit with us a while and that was nice. The Lord is using us to touch lives around us in this place and we are glad.
Thank you for your continued prayers. His mercies ARE new every morning and He IS faithful.
The EP Team came by and checked Little’s wound. Turns out the skin has separated a bit more AND she has an elevated temperature (while on Tylenol) and so they want to keep her here. The measure for going home will now be two days with the wound not getting worse AND her temperature not trending higher. I am disappointed about not going home but so thankful for doctors who are watching out for our Little even if it means making unpopular decisions!!
Becky-Thanks so much for the update. I’m THANKFUL Little was approved! Continue to pray.
Is the PICC for impending surgery or is she going home on the drip? When we have bleeding near the site sometimes our docs let us do a ice pack rotation
She is going home on a Melrinone drip. She has a cute little (sarcasm) bag/pump.
I never knew I had anything in common with a pacemaker, but as another Melinda I will be praying for her heart to keep beating in perfect rhythm until a new one is found.
Good to hear updates and names, Melinda & Frank! PTL. Praying for you all.
You are amazing. God has gifted you and provided grace for you to be able to be Little’s Mom, and you are utterly amazing. I love you! Praying for all the checklist.
You are such a wonderful mom!!! Prayers for the wound to heal and temp to drop. Prayers for her heart transplant to be entirely successful.❤️
Becky, I am so sorry this is your story right now. I’m praying for you every day. You are loved!!
Lots of love and prayers for all. That is a lot to manage! You have always been ready for the challenges, Becky! Grace, grace, grace to you and Little.
Hi Becky, my name is Robin – I work with Jeremy at ELIC. My heart is really heavy for you and I empathize so much, as I am also a mama of 3, including a 14-yr-old girl. Our entire staff covered you guys yesterday in our weekly prayer meeting. I have also been praying for you all and will continue to! This verse has been such a comfort to me in seasons of uncertainty:
“I will lead the blind by ways they have not known; along unfamiliar paths I will guide them. I will turn the darkness into light before them and make the rough places smooth. These are the things I will do; I will not forsake them!” Isaiah 42:16
Thank you for sharing your story with us!
I am just now reading this blog post… am behind a bit! But, praying and asking for progress towards home! Love you much!