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

IMAG0896

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.

IMAG0895

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

IMAG0903

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

IMAG0909

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!

IMAG0876

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.

Maddie is hospitalized

Strong Maddie

When I was a teenager, I’d pour all my angst into my journal. Every crummy thing that transpired was recorded with detail. I had many happy moments and much to celebrate but those times would always get left unwritten because I was too busy enjoying the good. I didn’t mean it to be that way. It just became the best method for me to vent my frustration with life.

It seems that this family blog has met the same fate as my high school journal. I have many wonderful memories of our summer’s activities and autumn doings that I’ve meant to share but have been hard pressed to find a free moment to relay them. Instead, I’m writing today with bad news.

Maddie was hospitalized late Tuesday night. Bringing her into Children’s Hospital with suspicion of pneumonia turned into the discovery that she was experiencing heart failure. Her liver was extremely bloated (4 cm) and her body was under severe stress.

Let me back up. All four kids had been sick with a viral illness for several weeks. Maddie was actually the least affected one. Jake and Joe started antibiotics for sinus infections and Maddie started the same medication just to be on the safe side. Her complex anatomy and recent heart surgery keep us erring on the side of caution. Warren’s asthma was bad enough to visit a specialist who started him on heavier medications. They all completed their course of antibiotics, everyone seemed to be improving, and we moved on with our busy schedules.

It’s been fairly cold here recently. Some days were in the low 30’s. Little feisty Maddie often refused to wear proper gear when going outside. Her bluish lips didn’t seem that out of place as she stood at the school bus stop with minimal coverage.

When the third day passed with a progressively worsening cough, prolonged cyanotic symptoms (blue lips, etc.) even after the blankets were piled on, and decreased energy, we decided to take her back to the doctor. There we were told that her chest x-ray showed some fluid accumulation. It could be a pneumonia. We’d better go to Children’s Hospital’s ER for further testing.

Upon arrival, we learned that her INR level (used to measure the thickness of her blood while on Warfarin) was through the roof. Her normal range is 1 to 2, where she’s been since the Fontan surgery. The lower the number, the thicker the blood, the higher the number the thinner. Both ends of the spectrum have their problems, especially for Maddie’s circulatory system. That night she was at a 12. My jaw hit the floor.

Meanwhile, we’d watched her oxygen saturation levels lower on the monitor. They started her on oxygen and tested for bacterial and viral infections. Nothing was showing up and after a few hours of monitoring and a bit of sodium chloride to help her dehydration, they were considering letting us go home. When the ER doctor tried to wean her off the oxygen her vitals stopped looking good. At 2:30AM, she was admitted for closer observation.

Everything took a turn for the worse the next day. The doctors and medical team held “rounds” that morning and were still debating on the symptoms. It didn’t seem like pneumonia, though they continued new antibiotics just in case. An echocardiogram ordered for the afternoon would provide more information about her pulmonary veins, which are always problematic for her, and of course would see what was going on with her special little heart.

The results were like a blow to the head. She was experiencing heart failure. Because her heart muscles were not contracting properly, fluid was backing up causing increased pressure in her Fontan circuit and bloating to her liver. Nobody really had answers for why it was happening. She’s always a challenging cardiac puzzle to piece together.

Did the virus she contracted along with the rest of the kids become too taxing for her heart to handle, making her circulatory system weak? Or was she already experiencing failure slowly over time and we just had no idea?

It’s Friday (technically Saturday since I’ve finally gotten the emotional strength write this down at midnight), and we think that we’ve gotten things figured out as best as possible.

The most likely case is that she was already deteriorating. This virus was just too much for her to handle. The fact that finding her veins during blood draws for INR checks had become increasingly more difficult over the last couple of months may have been a sign we just didn’t recognize. The IV fluids she received probably pushed her over the edge, since pumping extra fluids directly into an already taxed blood stream only causes backup in the system. In other words, it was only a matter of time and we just didn’t know. At least it was sooner rather than later.

But things are looking up. Once they began draining the fluid with our old friend Lasix and starting her on Enalapril for her heart muscle contraction she’s been showing steady improvement.

In order for her to go home she needs to be completely off the oxygen, have little fluid in her lungs and liver, and show stable vitals: good heart rate and respiratory rate. They’re hopeful for the beginning of next week. We’re hopeful that it’s at least before Thanksgiving.

This is a set-back to her overall health but a manageable one once she’s stable. Her echocardiogram today showed improvement in pumping function but also a new issue with leakage in her tricuspid valve. We don’t know how that will resolve yet. At the very least she’ll be taking the Enalapril medication indefinitely.

We are exhausted. It was all so sudden and unexpected. Everyone, especially Warren, Jake, and Joe, have felt the emotional impact of this situation. They miss their sister incredibly. Maddie is holding up but would give anything to go home and be with her brothers. I could barely bring myself to write this story down because it’s so raw and lengthy and unbelievable. But as I was watching “Grey’s Anatomy” to zone out and realized that I understood about 95% of the medical jargon and procedures they were rattling off, I figured I was ready to share.

And I am ready to share. This has been a roller coaster ride with many unknowns but we have already witnessed miracles and felt the strength of endless prayers. You, our dear family and friends, have stepped in once again to provide support and encouragement, meals and babysitting, and so much faith and love.

One day I want to share with you the happy times that we lived this summer as we watch our fighter girl Maddie run and play like she always wanted to do but never had the energy for pre surgery, and post pictures of all the laughing we did as we had adventures and breathed in the summer air. But right now I will share with you our gratitude for our precious girl’s life, for our happy family that has unified under the strain of this trial, and give our unending thanks for the kindness that you continue to show to us.

We appreciate all of your prayers and good thoughts.

Swordfighting

Legoland

The four kids were sword fighting with these silly foam things they got as souvenirs from our recent trip to Legoland California. They were screaming and hollering in good fun when suddenly it turned ugly. Maddie shouted, “Stop, stop! Stop, Renny!” Warren reminded her that she was holding a sword so she was fair game. They were only pretending anyway and it didn’t even hurt.

Calmly, he looked at her and said, “Maddie, if it were a real sword fight, most of us would probably be dead.”

Zero Tubes

Tube free!

Maddie is once again tube free. Can I get an amen?!?!

It’s been 7 weeks since the Fontan surgery and Maddie is running around the neighborhood like a champ. Her last chest drainage tube came out on Friday. It was, as always, traumatic for her as she fought to leave it in indefinitely rather than remove the bandaging and suture, but she faced her fears and let the doctor remove it all.

Today we saw her cardiologist. Maddie’s chest x-ray, oxygen saturation, and INR levels (how fast her blood clots while on Warfarin) look fantastic. In a nut shell, she is doing amazingly well.

And you can see it in everything she does. It’s evident in her face, her eyes, the way she moves her body. She doesn’t get winded when she walks up the stairs anymore. She rides around on her tricycle longer. She can run down the street with her friends without needing too many breaks. Her rosey cheeks and red lips show us that she’s actually getting blood flow to those areas now.

There is no question that her quality of life has improved. What a tremendous blessing that we live in a time where she can receive this kind of extensive treatment and not only survive but actually feel better.

It took a long time to get here but we are only going upwards now. She is astounding to me. Her bravery and determination are absolutely humbling to witness. I am so grateful for this strong, tough girl.

Maddie’s Homecoming

Welcome Home Maddie

It was an all out parade. Neighbors and church friends lined the street as we finally pulled the car into the driveway.

Maddie was home.

Welcome Home Maddie!!

PHOTO CREDIT: Rumpi

She was overwhelmed by the party. Cheers, balloons, cookies, popsicles, streamers, clapping. What a joyous commotion but definitely a change from the constant but subtle beeping sounds of the hospital room.

After a few minutes of breathing space in the house, and once the new Elsa costume her friend Charlie had given her was fitted properly over the rest of her clothing (despite the 70+ degree weather!), Maddie was ready to join the block party.

Princess Elsa

Oh, what a fantastic homecoming. Just one more example of the tireless support we received during this long ordeal. We are so extremely grateful for the love and support of these dear friends.

It’s good to be home again.

Fontan Recovery: Home

Goodbye, Children's!

We are shouting it from the rooftops and the internets: Maddie is coming home today!!!

I wish I could say that she is tube-free but instead I’ll just be grateful that she’ll be eating dinner with us, sleeping in her own bed, and hugging her brothers tonight.

All of your prayers, all of your kind words and deeds, all of your tireless support have led us here. My heart is full to bursting with gratitude.

We love you, dear family and friends. Thank you for standing by us as we struggled through these long 5 weeks.

Welcome home, Maddie Girl!

Fontan Recovery: Day 37

Building Legos

It appears that it is time for Plan B.

Thursday marked five weeks since the Fontan surgery. In so many ways, we are worlds better off than we were back at the beginning of April. Maddie has almost completely returned to her typical, silly self. She is climbing around on her easy chair, her bed, and anything else she can find in her hospital room. She speeds through the hallways on her tricycle, making the doctors part ways as she plows through their morning “rounds.” She giggles and laughs as she blows bubbles with the multiple packs of gum she’s received from family and friends. All dietary and liquid restrictions were removed this week (tactics they hoped would prevent fluid build up), so she can eat cheese sticks again and drink as much lemonade as she wants. But even with all that progress, for how amazingly well she looks and seems to feel, she still has one chest tube and she is still draining fluid.

Maddie's daily goals

The trend is definitely downward but unfortunately the drainage has not decreased enough. She ebbs and flows. Some days it’s 80 mL of output. Some days it will be slow for several hours and then dump 100 mL over night. Other times it will clog up in the skinnier part of the tubing with fibrous drainage, making us think that she’s finally come to an end, only to have it gush out 270 mL once the clog is “milked through.”

This morning, one of the Nurse Practitioners that we’ve come to know (we know almost all of them and a great many nurses) proposed an idea that seems crazy but a step in the right direction. It’s not a done deal, but she suggested that we finish out the remainder of Maddie’s recovery at home with the chest tube still in place.

Whoa.

Of course, this is not the plan I had envisioned for our escape from the hospital, but at this point I’ll take what I can get. It would mean much more maintenance on our part, measuring the output, disposing of the fluid, and many other tasks I would have thought above my pay grade. I’m willing to do it if it means our family can be back together.

She’s just so close to being done with draining that none of us, not one single person on her care team, can stand keeping her here as she slowly trickles down but is otherwise ready to go.

Is Plan B a perfect one? Are they actually going to go forward with it? No, not necessarily. Above all, we want her to be healthy when she comes home, so what they finally decide will hinge upon that stipulation.

And, as always, she could totally surprise us and dry up before the plan goes into effect. All she needs is two consecutive days of low drainage to demonstrate that her body is ready to take out the tube. Once they remove the tube it’s goodbye Children’s! They will send us home immediately! (And by immediately, I mean with at least a 4 hour wait because that’s how they roll here.) We might just, quite literally, run out the door!

So, this has been our week. Will she or will she not stop draining? The only question we want answered is the only question no one is able to answer. I apologize for not posting sooner but the reality of stagnation was too disheartening to share. I was waiting for something positive to report. Some sort of change we could all rally around.

Our prayer is that she will finally dry up. She doesn’t have to completely stop draining fluid, but she has to be under 50 mL for two days in a row. I can’t think of a better Mother’s Day gift.

Thank you one and all for your continued words of support and heartfelt prayers on our behalf. We are surviving, limping across the finish line with our faith strongly intact. I guess we can’t ask for much more than that.

Happy Mother’s Day to each of you who mother those around you and for all you women with a true “mother’s heart.”

Reflections on our family's joys & trials