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.

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!)

Fontan Recovery: Out of the ICU!

I’m not quite sure how it happened but Maddie was moved to “the floor” this afternoon. Yesterday, they were talking about the drainage from her chest tubes continuing to be abnormally high and today she’s out of intensive care. Go figure. Colin was told this morning and by 2PM she was settled into her new digs.

The Floor

This is a lousy picture but you get the idea. A hospital room is a hospital room is a hospital room, in my opinion. Sure, this is the older wing of Children’s, so we’re missing our own mini fridge, the large windows with extra light streaming in, the hipster color scheme, the giant TV, the parent lounge with water and ice dispensers… maybe we should have held out a little longer! But at least we don’t have to share a room. Hooray for being in isolation! So what if it’s because she’s tested positive for MRSA? Have I mentioned that yet? This kid just can’t get a break.

Leaving the ICU feels so huge right now. It’s like we’re actually making progress! Every little step forward is one step closer to home.

It looks like this will be our residence for the next several weeks. We’re trying to make it feel more homey and pleasing to the eye. Many, many cute drawings from friends, family, and kids in Warren’s 3rd grade class will cover her walls to remind her that there are many people out there praying for her speedy recovery.

I believe that can still happen. The drainage has to stop. They’re restricting her fluid intake, altering her diet to low fat, and pumping her full of diuretics to dry her up. Our prayers continue to be that the fluid will stop draining and that she will find happiness and comfort despite her situation. Please join us.

We’re thankful for all of your kind words and love.

More details about the pacemaker surgery soon!

Fontan Recovery: Pacemaker Surgery Over

Before surgery

The surgery is over. The pacemaker went in without problem. Colin and I were relieved to hear her determined wails down the hallway as we walked back to our room in the ICU to see her.

I will post more later about the details. For now, know that she is okay. Maddie is a brave, strong, wonderful girl. She reminds me every day what courage means.

Thank you all for your prayers and tears and words of encouragement. Your strength lifts us up.

Fontan Recovery: Pacemaker Implantation

Home at the ICU

Home at the ICU

It’s difficult for me to even write these words: Maddie is going back into surgery tomorrow morning. The cardiac team feels that her heart can no longer handle staying in the junctional (JET) rhythm. Her body just can’t seem to resolve it on its own. They’ve decided to go forward with implanting a permanent pacemaker.

Normally, this would involve placing the device in an incision below the breast, but since she has just had open heart surgery and her sternum is not yet fully healed they can re-break it and do a more thorough job of placing the leads with an open chest cavity. This process will make the connection more stable in her body. The device will be placed behind her abdominal muscles.

But the words “re-break the sternum…” They are just too harsh to accept right now. My heart hurts for this little girl who was just beginning to heal. I can’t bear the thought of her going through the nausea, the pain, the anger, the fatigue all over again as she recovers from the anesthesia and surgery.

The risk involved is lower than the last two procedures. I don’t worry as much about mortality. It’s her emotional well-being I fear will suffer. It’s the thought of her sinking into a depression again that made me cry at this news.

Again we are going forward in faith. Again we are asking for prayers and positive energy. Again we are putting our trust in God’s hands, hoping that He knows what’s best for this precious little girl.

Fontan Recovery: Day 12

Yesterday, I was completely dejected.

Maddie is still tachycardic (in a JET rhythm), she may need a permanent pacemaker, is still draining quite a bit from her chest, and has been resistant to anything improving her mood. No toys, games, shows, movies, interactions, not anything has put even a smile on that girl’s face. In short, she was depressed and has been since she woke up from her surgery twelve days ago. It was almost as if she was choosing to be unhappy. Recovery has taken it’s toll on this silly, feisty girl.

Watching your child suffer from pain is unbearable. Watching your child sink into depression is almost worse.

And then a miracle happened. I came to the hospital today to switch Colin and as I pulled into the parking lot, he sent me this picture:

laughing again

Maddie was laughing. Not just a little either.

This image. This image brings me more joy than I can express! My prayers have been that she could find peace and comfort during this process. I feel like those prayers have been answered.

Today, I am grateful. I’m grateful for a nurse that could find ways to interact with Maddie to elicit smiles and laughter. I’m grateful for family members that visit and call regularly to cheer her up. I’m grateful for friends that support us in numerous ways. I’m grateful for a little girl who fights and doesn’t give up.

She’s still tachycardic. She’s still in the ICU. She still has a long way to go. But today I am focusing on the good.

And this smile is good enough for me.

Reflections on our family's joys & trials