Tag Archives: Transplant

Transplant Recovery: Day 2 and 3


On Day 2 (Sunday), Maddie was extubated, meaning they took the breathing ventilation tube from her throat and mouth so she could begin breathing unassisted, first with oxygen in a nasal cannula and then completely on her own with room air.  One out of the four chest tubes for lung fluid drainage was removed.  Two IVs were removed from her right arm. She began drinking and eating again.

On Day 3 (Monday), they removed the second to last chest tube, she walked around the ICU hallway a bit, and they talked about moving her to the regular Cardiac floor sometime this week.

Medically speaking, Maddie is doing amazingly well recovering.

Psychologically speaking, the last two days have been our own private version of Hell.

If you haven’t heard me say this before, I’ll say it again. Maddie is a fighter. And by fighter I don’t mean she is tough and takes what’s given to her like a champ, though she is both of those things. What I mean is, quite literally, Maddie DOES NOT GIVE UP. On anything. Not ever. Period.

This attribute, combined with heavy painkillers and the slurred speech of one coming out of said medications, makes for an extremely irrational 6-year-old.

Oh, you want chicken noodle soup, extra, extra hot from the microwave? Boiling. Great! But you want to feed yourself? No, your hands and arms aren’t fully functional after coming off the strong sedatives used while intubated so I need to feed you. No, you may not do it yourself. No, thrashing around and trying to scratch out my throat will not enable you to do it yourself today. Eat the soup while it’s still hot. Oh, now it’s too cold because you’ve spent the last 10 minutes screaming that you have to feed yourself and you want our kind, patient nurse to heat it up for you again? Sure. Just remember that I’m the one who’s going to feed it to you today. No, screaming will not change that fact. Why don’t you just let the morphine, and Benadryl, and Ativan do their jobs and fall asleep like I can see your eyes want you to do. Oh, you’re not tired. You want to watch the Jim Carey version of The Grinch again but you missed the last part because you keep dozing off, so you want to start it over? Okay, you’ve watched the first 2 minutes ten times now, should we wait until after you’ve taken a nap to watch it? No, you want to start it over again because you missed the last 20 seconds of the beginning that you’ve now seen 30 times? And you want to be the one controlling the keyboard even though your hand is completely unsteady and keeps missing the button? 

Repeated for 6 hours.

Yes, I’m grateful that she is so strong-willed and stubborn. Yes, I’m grateful that she pushes on despite what most would find to be debilitating circumstances. Yes, I know that these qualities will continue to serve her well into adulthood. But GOOD GRACIOUS ALMIGHTY! May the effects of these medications quickly wear off so that we can at least return a little reason to the conversation?

She is good. She is strong. She is doing well.

She is a fighter. With the love of those around her and the prayers and well-wishes of the many who have offered support, we will get through these hard days.

I’m just thankful that these experiences happen in a world where there is dark chocolate.

Transplant Recovery: Day 1

Brave girl

The surgery went well. Better than expected, actually. What we were dreading would be a complicated transplant with excessive bleeding was straightforward and relatively smooth. From the first incision at 5:10PM to when they closed her up at 1AM, everything went as planned. Another incredible blessing to witness.

And there are many blessings that I want to share with you but I am utterly, completely, so profoundly exhausted, as is Colin. They will have to wait a bit to be told.

Right now, know that she is well. She is peacefully sleeping under heavy sedation while the breathing tube gives her minimal support. All of her numbers and vitals are looking good. They’ll begin the immune suppression this afternoon. Everyone is pleased with her current state. They will keep her intubated at least through tomorrow so that she can rest as much as possible.

Again, please excuse the graphic picture but this is Maddie, full of fight and always, always amazing us.

In the ICU after Transplant

A few times she has woken up, disoriented and scared, her wide eyes full of tears and searching for understanding. Her silent cries blocked by the ventilation tube cut to my soul. My hand touches hers and I tell her she’s amazing and that Dad and I are here by her side, not going anywhere. Her brothers are proud of her. So, so many are praying for her, for us. She falls back into deep, healing rest. Her precious adopted heart beats strongly on.

The first hurdle is down. It’s over faster than we ever could have imagined possible. We are astounded. Completely. And so truly grateful.

But we have just begun on this long, trying journey. There are days and weeks and months ahead of challenges and triumphs. Right now though, I am staring at the face of my angel girl, seeing once again her resilience and bravery. One step at a time. One moment at a time.

At the end of this Christmas season, as we’ve focused on the birth of our Savior Jesus Christ, and have witnessed our own Christmas Miracle, we cannot help but see how it is through His love and sacrifice that we are able to endure.

Thank you all for standing with us. Thank you for your prayers and love. We have felt them sustain us. We know we are not alone.

Transplant Surgery Updates

Below are the updates we received during the night as our baby slept on the operating table. I apologize for not posting them here earlier but the blog is not a very effective tool for real time information.

9:30PM – Maddie is on bypass and the heart is in the room.

10:30 – The heart is in and beating. Please send a prayer of thanks, healing, and strength on behalf of the donor family.

11:07PM – The transplant is complete. That sweet, miraculous heart is beating strong in our precious baby girl. The doctors are pleased with what they see. They have some additional monitoring and wrap up to do before we can see her but our spirits are lifted knowing that the surgery is over. We are so incredibly grateful. Your prayers, every single one, carried us through these long horrible hours. It is only by the constant companionship of the spirit of God that we could pass through this trial. And it is only through His guiding hand that we will go forward still. Thank you all for your unending support. More updates to come.

Transplant Has Started

PHOTO CREDIT: Tami Cutler PhotographyPHOTO CREDIT: Tami Cutler Photography

The Cardiac Team called from the Operating Room. The transplant surgery has begun. Her complicated anatomy will make this already detailed procedure especially labor-intensive and difficult. We expect it to last as long as 6 hours, probably more.

We are breathing. In and out. It’s one moment at at time now. Our prayers are heard. We know that.

Again, thank you all for your support. Your faith strengthens ours.