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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 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.

Fontan Recovery: Day 24

Colin and I have, what they call, “Hospital Brain.” Confined to the same hospital room, day in day out, with interrupted sleep, constant beeping from machines, hours of waiting around, and moments of intense stress we have been pushed beyond fatigue. We are so sleep-deprived that our sluggish brains cannot function anywhere near to normal capacity. We’re at about 30%, if we’re lucky. Sometimes that’s combined. Think early stages of caring for a new born baby and crank it up at least 5 notches, then remove the joy and wonder of cuddling and first smiles that make it all worthwhile and you’ve got the picture.

Madds on wheels

But this Maddie girl. She continues to astound us with her fierce determination and resilience. This girl is beyond tough. She is the very definition of strong.

Who else could be days out from her third surgical procedure and, with three chest tubes hanging down, ride a tricycle around the hospital floor? Multiple laps, mind you.

(This fine video brought to you by Google + courtesy of the Auto Awesome function.)

Is she jolly? Does she laugh readily? Does she cooperate easily? Does she even interact when friends stop by to visit. No. But she is worlds better off than earlier this month.

Somehow, despite the pain, the anxiety, the fear that come with healing on the surgical floor, Maddie manages to forge onward. She gets up and moves around, walking from the bed to the chair to the commode. She swallows pills and deals with the fluctuations in all the medications, the blood thinners, the diuretics they’re prescribing to dry up the fluid drainage. She suffers through the dressing changes as tubes and catheters continue to be removed, skin red and sometimes blistered and always the adhesive too strong for comfort. Every day she bravely faces the blood draws required to obtain just the right INR levels for her now life-long dependency on Warfarin.

But here we are, three weeks and three days into this thing and at long last we are finally seeing the end of the tunnel. On Friday, they removed her PICC line and the last of her IV medications. Yesterday, they removed the mediastinal tube, which leaves two remaining chest tubes.  Her total drainage output on Monday was 700-something mL for all three. This morning, it was just under 100 mL total. Steady progress. We’ve watched her improve right before our eyes.

Which brings me to my last thought. We are only able to be here with her everyday, watching and caring for her through these long hours because of all of you. Your prayers, your kind words of encouragement, your visits, your babysitting care, your meals, your gifts, your thoughtful treats. All of them have made it possible for us to see our little girl return to health.

Several nurses have commented on how saddened they are by the children they care for here who are without their families because of work constraints and distance, some residing in far away states. But we are able to be here every minute because of the love of our family and friends.  Your support is an answer to our prayers. God has answered them directly through you. Our gratitude is immeasurable.

We are nearly there.  Please bear with us just a little longer. We can hardly wait.

 

Fontan Recovery: Day 18

So many things to report but I just can’t seem to find the time or the energy. I will say that the more I watch Maddie handle the trial of constantly being woken up for vital checks and prodding, the more I see her suffer through peripheral blood draws while asking for precise descriptions on their procedures to get them straight in her mind, the more I see her eat, drink, get up, and use the bathroom with those painful chest tubes, the more I admire this girl. Not only does she have spirit and fire to keep her going but she has strength and determination. Maddie does not give up.

And that’s why when the nurse asked her if she wanted to go for a walk down the hall this afternoon she not only walked down the corridor but went for the complete loop around the floor. I shouldn’t have been surprised but I was. And so proud, too. It was like watching her take her first serious stroll on her own as a baby, finally independent and ready to explore.

Over dinner tonight, I asked her what was her favorite part of the day. She said it was walking. I couldn’t agree more.

Pleural effusions, you can’t keep our Maddie Girl down! See for yourself…

(Please excuse the bare bum peeking out!)