Transplant Recovery: Day 2 and 3

Stubborn

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.

Waiting for Transplant

Watching the rain

We’ve been waiting all day long. I feel like I’m going to burst. The anxiety is like a solid ball lodged in the base of my throat. This unknown is unbearable.

They just took Maddie to the operating room. Everything on our end looks good so far but we still don’t know for sure if this transplant will happen today or not. Anesthesiology is getting her prepped for surgery. We should know within the hour if we are moving forward.

Maddie was scared, still fighting off the sedative as we kissed her goodbye at the OR doors. She never, ever gives up. It’s this strength that we look to as we step into this darkness.

But we know we are not alone. Thank you, every single one of you, who have expressed love and support. Your prayers are tangible. They are lifting us up.

Please, please also remember the grace and goodness of the donor’s family at this time. They need our prayers. Our chance at life is at the mercy of their tragedy.

I will post more as soon as we know.

Transplant

We just got off the phone with Seattle Children’s Hospital. I didn’t even get a chance to let you know that we had listed Maddie for heart transplant just this Tuesday. My hands are shaking as I type. They called to say that they may have a heart for Maddie. We check in at 9AM tomorrow morning (Dec. 26th). I am in complete shock. There will be several hours of testing to determine if it’s viable but Maddie may be in surgery as soon as 2PM tomorrow afternoon. We are so grateful for all of you who have prayed for us before. Please, we are in need of that love and support again. I will post more as soon as we know if the transplant is a go.

Discharged From the Hospital

Bringing home half the hospital!We have our own family Christmas miracle. Maddie came home from the hospital today!

I have so many more things to say but at this moment I am exhausted. Sleep is long overdue.

In the meantime, know that Maddie is doing pretty well. Her energy is up and she is completely off the IV medication (milrinone). We’re looking forward to a relaxing, simple Christmas together at home.

Thank you! Thank you so much, everyone, for your unending support, your love, and your prayers. Every meal, act of service, babysitting hour, thoughtful word, and especially prayer strengthened us. We’re so grateful to be surounded by such good souls and thankful for the wonderful new friends we continue to meet on our journey.

I promise to update further, but for now, please just watch this video. It sums up the joy our family feels for Maddie’s return perfectly.

Sibling Train from Jeannie @ Live. Laugh. Learn on Vimeo.

Waiting

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Nothing keeps this girl down. Heart failure? That doesn’t stop her from laughing and racing around on the loaner tricycle. She speeds down the hallways of the ICU and plows her way through doctors making “rounds.” People smile in amazement.

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This is how we wait for answers in the Cardiac Intensive Care Unit.

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We still don’t have any definitive plans for what will happen next or when we’ll be able to go home.

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We are taking it one day at a time.

But Maddie is in good spirits. She continues to respond well to the milrinone. The doctors continue to observe her. We are feeling more peaceful with every new day.

We will just continue to wait.

Thank you everyone for your beautiful and comforting words of support. And thank you for your prayers. We have felt them strengthen us incredibly.

 

Heart Failure

WaitingWe returned to the hospital on Sunday. In short, Maddie’s heart is failing.

After being discharged from the hospital last week, spending Thanksgiving with family, and starting a new regimen of heart medication and diuretics, we hoped that she would improve enough without further intervention. Headaches and poor eating by the end of the week led us to contact her cardiologist. Our hopes were dashed when she said we’d need to take her in to the ICU. Another echocardiogram confirmed the devastating truth that her heart function continues to remain poor. In fact, we can assume now that it will never be as good as it was last spring.

So here we are, on the same Cardiac unit where she spent the first few weeks of recovery after her Fontan Surgery, only this time there are so many unknowns.

It’s been a few days now and though I’ve intended to sit down and share this news with you, I just couldn’t. The reality of the situation has been too hard to face.

Here is what we know right now. The IV medication (Milrinone) she’s been receiving continuously has shown marked improvement in her well-being, overall. She is eating, sleeping, and running around (literally, whenever she can, including riding another tricycle, cords and all) better than she has in a long time. This “cardiac tune-up,” as they fondly call it, is making a difference in her pumping function, just as they hoped, allowing her other mechanisms to relax a bit. But these are only clinical improvements. This medication is not a long term solution. It’s only enough to give her cardiac system a break.

The reality is her heart is just tired. Her special little single ventricle heart was never meant work this hard. It may have accomplished all that it can do at this point. Her cardiac team is beginning to sense that now. We’ve met with the Heart Failure Specialist doctors already. The reality is that Maddie may be facing a heart transplant in the near future.

There are some Plans A and B that we are clinging to before we truly commit to this Plan C.

Plan A: she continues on this milrinone IV drip for the next 5 days, giving her heart more rest, seeing that she is truly improving , before they begin slowly weaning her off to be replaced with strong heart failure meds she can take at home. A three week stay to assure the plan has worked and then we resume our “normal” lives and live it up until we see a decline again. Hopefully not for awhile. This is what we pray for continually.

Plan B: She responds well to the IV milrinone, but not well enough. We spend a bit more time in the ICU and get trained in how to administer the drug at home. She caries around continuously in a little pouch and we become more intensively involved in her medical care. She would probably be visiting the hospital more frequently, as well. Life, as we knew it would change.

Plan C: she doesn’t respond well to weaning off milrinone or to the new heart failure medication. We’d then begin the long, painful (emotional and possibly physical) process of heart transplant evaluation with no guarantee that it will be successful at any stage of the process.

Reading the cold, hard facts must be shocking and difficult. I apologize. I needed to write it down. Make it official. It’s the only way that I can prepare myself for what is ahead. It’s only fair to be direct so that you know what we’re facing.

Plus, we need your prayers. Oh, how we need your prayers of healing, but more importantly, of comfort and support. We do not know what will happen.

We started this journey almost 6 years ago with a tiny, fragile baby who had no family. Her prognosis then was foggy at best. Her story was presented to us and we immediately knew in our hearts that she was special, even though our logic told us it was crazy to take a child with such severe problems. We weighed it out in our minds. We fasted and prayed. How could we make this decision?

And then one night I was talking to Julianna, my pseudo-sister.

“How can I take this baby?,” I asked her. “How can I go forward with this when I don’t know what will happen? I don’t know if my heart can heal from that kind of loss. What if she dies? What if she dies right away?”

“Then you just love her. You just love her for as long as you have her,” she said through both of our tears.

And we have. And we will.

There is no doubt in our minds that Maddie was meant to be in our family. That answer to prayer back then continues to be a sweet blessing as we face each challenge. God knew that we’d be here, at this very moment, looking down a very difficult road. He knew we’d be okay then and I feel Him strengthening us each day, reminding us that we will be okay now.

And we will.

Maddie Comes Home Today!

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Maddie has been discharged from the hospital today. She’s completely off oxygen, her liver has returned to normal size, and her energy level is better than it’s been in days.

There is so much more to say but it will have to wait for another post. Just know that we are thrilled with her progress and so grateful that she will be home with us again.

I cannot thank you enough for the support and kindness you’ve shown to us. Your prayers and positive energy made all the difference to Maddie. We are so grateful to be surrounded by so much love.

Reflections on our family's joys & trials