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.”

Fontan Recovery: Day 30

Hospital room

One month. We’ve been here one month.

It’s not completely shocking to still be at the hospital, but when we were so close to finally leaving, only to take a step backward in recovery, it has started to feel claustrophobic. Like we’re never going to escape.

Especially yesterday. Yesterday, Maddie had not just one but two tubes placed back in her chest cavity. They are smaller than the previous ones placed in during her Fontan– almost like straws– but they still hurt. They removed several hundred mL of fluid from her left pleural cavity, as well as some air from the right.

Going to the OR

She was scheduled for 2PM surgery but the cases before her ended up being more complex than they hoped, so she was pushed back until 5:30PM. That was 18 hours of fasting. No food, no water. She didn’t eat until 9PM. She kept telling herself throughout the day that when it was all over she would get to eat her dinner. Chicken noodle soup. That’s all she wanted.

Yesterday was painful in every way imaginable. Seemingly endless waiting filled with frustration and anxiety. Over and over she would repeat the steps they would take in surgery, to get it straight in her mind and cope with her fears.

“First, they’re going to put the mask on me?”

“Yes,” we would say.

“And then they’re going to do three things? They’re going to cut me, then they’re going to put the tubes in, and then they’re going to put the bandage on?” she’d whimper. “And they’re going to be quick?”

“Yes,” we’d reassure her.

“And I’m not going to feel them cut me because I’m going to be asleep?”

“Yes,” we soothed.

And then she would cry because, above all, she was terrified of the anesthesia mask. Calming her fear while stifling our own anxiety is thoroughly exhausting.

The procedure went well. They did what they needed to do and we don’t doubt the necessity. It is just unbelievably awful to revert back when we seemed to be making such progress.

And it’s in these moments that I feel the sinking weight of bitterness try to consume me. The whys and the “how much more does she have to endure” questions creep in to discourage. Maddie feels it too. She woke up this morning angry. Angry that she is pain, that she has tubes again, and that she doesn’t get to go home yet.

Because, you know what? This sucks. I hate this. I try desperately to remain positive, but today I’m feeling trapped. It’s horrible to watch your child suffer emotionally and physically over and over again for 30 days. The pouring rain outside, in contrast to the past week’s warm sun, reflects my dark mood quite nicely.

And yet, it’s this same little girl who is suffering through these pains who teaches me how to endure. The morning was rough until she said, “Mama, I’m sorry I was mean to you,” and then she moved on. This afternoon she laughs. She finds energy to play with her toys. She continues to wow the nurses with her self-sufficiency. How can I have a bad attitude when she clearly hasn’t given up?

Before the first surgery, Colin gave me a blessing of comfort. The words still echo in my mind. He said that the burden of the emotional pain of this trial would not be removed but that I would be able to endure.

I look at my strong little girl feeding herself, sitting up in the chair, breathing room air all on her own and know those words are true.

We can do this. Just a little longer.

Fontan Recovery: Tube Replacement

I just feel sick. Maddie is going in to the OR this afternoon to have her left chest tube replaced.

X-ray selfie

The x-ray this morning (Colin and Maddie’s selfie picture above) showed that air and fluid had accumulated again in her left pleural cavity, and at a disturbing rate. Oxygen and medications were not going to be strong enough to solve the problem. The doctors plan to put in smaller tubes to allow the drainage to come out. The tubes will be in for an indefinite amount of time.

Another set-back. This is a hard blow. My heart aches for this little girl who is scared about another procedure. A little girl who is crying because she doesn’t want any more tubes in, she just wants to have zero. A tiny girl who is so hungry but can’t eat or drink until she wakes up from the anesthesia well after 4PM.

At least we were not already home, comfortable and lulled into thinking that all troubles were over when she suddenly became distressed with breathing issues or some other horrible symptom. Being here, stuck longer at the hospital, is exhausting mentally and physically, but we’re still in survival mode. We can maintain it a little longer.

She’ll go in around 2PM. Please pray for her speedy recovery. Let’s get this little girl home soon.

Fontan Recovery: Day 28

We are so close. So close, we can taste it.

After Maddie’s chest tube popped out on its own, we figured they would be ready to remove the last tube before the end of the week. We were right. Today, she is tube-free! Four weeks to the day they were placed in.

Zero tubes

“Now I have zero tubes?” she asked in disbelief. She couldn’t wait to tell her brothers the good news.

The doctors teased us by suggesting that she could go home as early as tomorrow, but the x-ray this afternoon showed there was too much fluid in the left pleural cavity from where the chest tube slipped out prematurely. It’s not unexpected but it is disappointing. A weekend discharge seems more likely now.

In order to prevent placing a drainage tube back into that cavity, for the next few days Maddie will wear an oxygen mask to help dilate her vascular system and will increase her diuretics. Hopefully, this combination will allow her body to reabsorb that extra fluid.  Exercise and increased respiratory activity also make a big difference.

Oxygen

She’s not so crazy about the mask but the exercise, especially in the form of tricycle riding, is just fine by her.

Finally, after 4 weeks of confinement to the hospital, Maddie was able to go outside in the warm sunshine. Spring has been more like summer these last few days (glorious!), with temperatures in the high 80′s. This little girl was as pleased as punch to cruise around the hospital playground on her Radio Flyer and soak up the heat.

(Colin’s cinematography shines as he placed it in yet another darling Google+ AutoAwesome video montage.)

We are trying so hard to be patient. Above all, we want her to be healthy when she leaves. We certainly don’t want to have to come back because of preventable complications. But we are so anxious to have her home. We’re at mile 12 of 13.1. Sometimes that last leg is the absolute hardest.

Our prayer tonight is that her pleural effusions (the drainage) will clear up enough for her to be healthy.

Thank you. Thank you to each and every one who has prayed, shed tears, and cared for this brave little girl. Your support has made all the difference. Through all of this, we have felt your love and the love of God. Heavenly Father has watched over our family and has led us by the hand to endure, even at times when it all seemed too much to bear. We head to this finish line knowing that we have been carried so much of the way.

And now we wait for Friday morning’s x-rays.

Fontan Recovery: Day 27

Breakfast in the sunlight

Maddie’s chest x-ray came back indicating that, though there is some fluid in the left pleural cavity, overall she is well! No tube reinsertion needed! Another miracle.

Today she enjoys her breakfast in the warm sunlight with only one chest tube remaining.

As always, we are so very thankful for your kind words and faithful prayers.

(Her room is overflowing with drawings, toys, and cards from so many family members and friends. So much cheer for a little girl missing those she loves. We can’t thank you enough.)

Fontan Recovery: Day 26

Maddie was sitting on the easy chair, playing with the specialist from Child Life Services. Colin was trying to answer work emails. I was painting my finger nails. Another morning of killing time on the surgical floor when all of a sudden Maddie cried out, “Something’s leaking!” although we heard it as, “Something’s itching!” so we tried to get clarification. As she became more frantic, we peeked under her hospital gown to check.

Her left chest tube had come out!

Pleural effusions were gushing out of her chest under the detached bandage and falling tube. I rushed out into the hallway to grab her nurse and four more followed me back in. It was a flurry of gauze and tape and tears and screams and phone calls to the doctors and nurse practitioner. They tied off the hole and all was calm again.

The fluid continued to leak for most of the day, despite the suture. We’ve been through at least 4 bandage changes but it seems to have finally slowed. It obviously needed to drain so better out than remain in, we all agree. A chest x-ray was taken soon after and showed that her lungs were still fairly clear. Her oxygen saturation and respiratory rate seem to be fine, as does her breathing.

Since the tubes were draining less and less every day, the team was already considering taking them out this week. It may be that this premature extubation will end up being fine. Her body may have been ready anyway. But the fear that we have tonight is that they will end up replacing the tube because the fluid may continue to accumulate, and with nowhere to go it will sit on her lungs and cause breathing problems.

The thought of inserting another tube, with another surgical procedure requiring more anesthesia, makes me want to curl up into the fetal position and polish off this entire bag of dark chocolate covered pomegranates that Tami brought us. I just can’t face going backwards again.

So, tonight, our prayers continue to be that Maddie’s pleural effusions will dry up, that her lungs will be clear, and that she will not require the chest tube to be replaced.

Maddie blows bubbles

The picture above is Maddie blowing bubbles. Look at her standing, laughing great big giggles and enjoying her growing strength as she works hard to recover. I pray that she can continue on this path of healing and not have to make a U-turn.

I’m watching and re-watching this video from yesterday to remind me that progress happens, despite the set-backs.

Reflections on our family's joys & trials