Tag Archives: Fontan Surgery

Fontan Recovery: Day 2

Day 2

Bone tired. I suppose that’s the best way to describe how I’m feeling today. I’ve run two half-marathons, two gnarly 5-mile trail runs, plus a handful of sprint races but all of them together don’t combine to equal the feeling of exhaustion I have right now. Colin feels the same.

And we’re not even the ones healing from the surgery.

Chocolate milk

Yesterday, Maddie finally got her chocolate milk, guzzled it despite our pleas to take it slowly, and promptly puked it all up. She was feisty and angry about everything but the nurses were patient and tried to move her along. The sooner she can check off things like eating, sitting up, coughing, and eliminations the sooner she can go home.

And that’s all that she wants.

Missing brothers

Today, she is really feeling down. She is completely homesick. She is eating a little but still feels nauseated. She’s urinating but having trouble with the other process. She’s sitting a bit more but is resisting the urge to cough when she feels the fluid in her chest. Thankfully, she is resting peacefully most of the time but it’s like this situation is beating her. She’s lost her spunk and fire.

All three brothers came to visit today and though she was anxious to see them, she barely interacted as they took turns with her in the ICU room. They left her with cards Warren’s classmates made for her at school and a stuffed seal (a gift from Colin’s co-worker) that she can hug tightly whenever she misses them, which is often.

They miss her greatly too. The boys have a stuffed unicorn they can hug which my friend Bethany gave them. Warren sleeps with it at night.

This recovery is hard on everyone.

Over and over again we have been blessed by the support of friends, family, even kind strangers. So many people are going out of their way to help us. We feel every prayer, every kind act lift our spirits. This is a giant trial to experience, especially for our young children, but we’re not giving up hope for a speedy recovery.

We’re not letting Maddie give up either.

There may be many walls to climb before it’s over, but we know she can do it. She says she’s going home on Tuesday. Goals keep you motivated. One step at a time, baby girl.

Fontan Recovery: Day 1

IMAG0016

It was late by the time we finally got to join her in the ICU last night, but what an amazing sight she was to see.

I apologize to those of you who are sensitive to graphic medical images but I need to post this picture. It shows just how strong this little girl is. Plus, Maddie is super fascinated looking at the one from her last surgery. I know that she’ll be proud of this one, as well.

Up until about 5AM this morning, she was completely sedated. Any attempts to waken her were wasted. The poor thing was exhausted. Her care team had a goal to extubate (remove the breathing ventilation tube in her nasal passage way) before the shift change at 7:30AM.

Maddie made the goal! Unlike last time with her Glen, she was able to start breathing on her own less than 12 hours post surgery. Talk about a tough girl! So far, her recovery is right on track with their expectations.

We have a long road ahead of us. The next big hurdle is fluid drainage. She currently has three chest tubes to allow the extra fluid created by the pressure changes in her lungs to flow out. They are painful. The doctors are pushing to get the two side ones removed as soon as she’s ready, but we’re not sure when that will be. The central one will remain even longer.

Right now she is still extremely sleepy. She wakes up occasionally, with wide eyes, scared and unaware of where she is, only to realize that she is tied down by myriad tubes (other lines you see above that are plugged into various parts of her body monitoring medications, fluids, and systems), as well as arm restraints to keep her from pulling out the lines. She is thirsty. All she wants is chocolate milk. She cries for it with her little, weak voice made raspy by the breathing tube she had removed. It breaks my heart to tell her she’ll have to wait to get it. The nurse swabs her dry mouth with a moist mint-flavored suction sponge instead.

I am exhausted. I stayed all night on the couch turned fold up bed and slept for maybe four hours. Colin went home to be with Jake, Joe, and Warren. Family, as well as wonderful friends are caring for them while we tend to Maddie here. He’ll be joining me soon to spend the day together with her. I’ll leave this afternoon and he’ll take over. We’re planning 18 hour shifts in this fashion.

We could not do this without the absolutely incredible support from our family, our ward family [church congregation], and our amazing neighbors. Truly, we are blessed beyond measure.

The next several weeks will be trying but we know we can endure. Maddie proves over and over again that she is tough. She’s a fighter. We have the Lord on our side and all of you.

Surgery Is Over!

Silly girl

Maddie is out of surgery! Everything went well. Her surgeon was very pleased with what he found and with the repairs they did. I will try to post soon the details of the procedure. They are absolutely astounding.

We haven’t seen her yet. They need to get her settled into the ICU first. Most likely that will be within the hour. Just knowing that we can soon hold her sweet hand again is overwhelmingly joyful.

What an absolute relief to know that she is alright. I’m not even sure there are enough words to express it.

Thank you. Thank you all for your constant support. Your strength helped carry us.

Prayers were definitely answered today.

Waiting

Waiting

It’s 11:36AM. We’re still waiting in the pre-op room. We haven’t even met with the surgeon or anesthesiologist yet. I can’t keep my body from fidgeting. The waiting is consuming me.

Madie, on the other hand, is calm. She’s thrilled to be watching “The Nightmare Before Christmas”  on the touch pad. Mind numbing technology can be such a blessing.

We’re not sure what’s causing the delay. The other case must have been more intense than expected. When I start feeling resentful, I just remember the thoughts my dear friend and fellow heart mom, Patty, shared. Some day it will be you in the long, unexpected haul and another family will need to have patience with you. I’m thinking of that other family right now.

Delay

Unfortunately, we got a call last night telling us Maddie’s check in time was pushed back to 10AM which means surgery won’t start until around 11AM. Emergencies come up sometimes which are out of their hands.

Though this news is so disappointing, we’re grateful to spend a little extra time with her this morning. We’re praying her fasting status is bearable and that there are no further delays.

We are deeply grateful for your love and prayers and support. We have felt your faith strengthen our own.

First Case

What a relief. The hospital scheduler called today to let us know that Maddie will be the first case on Thursday, meaning we check in at 6:15AM that morning. Surgery will probably start around 7:30 or 8AM.

Since she will have been fasting (NPO) for 8 hours prior, this early morning call means we won’t have to deal with a hungry girl during waking hours.

Another prayer answered.

Pre-Surgery

Maddie Girl

Photo credit: Jamie Smith Photography

March 30, 2014 – The weight of this surgery has been almost unbearable in the last week and a half. Some mornings I have struggled to just get out of bed. I’ve been caught up in fear and allowed it to darken my thoughts and cloud my faith. Facing the unknown can be terrible and painful.

But today was different. Today I received the greatest blessing imaginable. Today I felt the prayers of many, many faithful people completely lift my soul and carry me in a way I didn’t comprehend before. It was tangible. An overwhelming feeling of love flooded me as I knew my Heavenly Father heard their prayers and mine. He is mindful of me and my sweet, brave girl. He has a plan and I just need to trust it.

I still don’t know the outcome of the surgery, or what truly lies ahead, but I am calm. Surgery day will come and we will face it as a family knowing that we are not alone.

We are so grateful for your love and prayers.

The Time Has Come

Angel Maddie

Five years ago, a tiny baby girl was placed in our care only to have us rush her down shortly thereafter to the hospital for open heart surgery– her second. It was an absolutely crazy time and a whirlwind of emotions. We knew then that her condition would require us to one day face another such challenge.

The time has come. Maddie’s cardiology team feels that she is finally ready for the Fontan, or the last surgery to complete the rerouting of her circulatory process. Surgery date is April 3, 2014.

This is, as you can imagine, huge for our family, both for good and bad. Good in the sense that, if successful, she will finally reach oxygen saturation levels that are more normal. She’ll be able to run and play with more strength and energy. Bad, however, because the surgery is high risk. Her complexities make this procedure delicate. And even if all does go well, the recovery is long. Putting life on hold for up to 6 weeks is hard on a family, not to mention how hard it will be on a little five-year-old healing from the pain of open-heart surgery.

My friend Shannon gave this box to Maddie as soon as she learned what was to come.

Brave girl

Brave Girl. Without a doubt.

The options for Maddie’s conditions (Hypoplastic Left Heart Syndrome, Total Anomalous Pulmonary Venous Return, Dextrocardia, and Asplenia) are limited: have the surgery, despite the risk so that she has a chance of thriving, or don’t have the surgery and watch as her quality of life declines. We had to give her a fighting chance.

There are so many unknowns, so many dark directions our thoughts can go. Answers to prayer helped us decide that this was the best choice for her. Sometimes that knowledge is the only thing that keeps us going.

I have been unable to keep up regular blogging for the past year but I want to be able to keep family and friends informed about Maddie’s condition, and how we’re coping as a family, and all the blessings that we continue to see as we prepare for this event. Please check back frequently for updates.

Thank you for all of the well-wishes, prayers, and support that so many of you have already given us. We feel strengthened by your kindness.

We go forward in faith.