Tag Archives: Madeline

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.

Fontan Recovery: Day 8

Peaceful

NEWS FLASH: Maddie willingly took her medications today! Fervent, heart-felt prayers work, folks. How else can you explain being able to finally reason with this stubborn girl??

Her pain finally got the best of her late last night and early this morning, so not only did she willingly swallow the absolutely necessary medications but she also took the oxycodone pain reliever, another one she had refused and puked up earlier this week. Doesn’t she look more peaceful in the picture above?

Today has been so much better all around. She’s still on the pacer and still has underlying junctional ectopic tachycardia (JET) rhythms in her heartbeat, but they’re hoping those are starting to resolve now. Her potassium levels are up and she’s eating and drinking like a champ. She’s sitting up more and starting to use her right hand to feed herself.

working with dad

Our friends and awesome neighbors, plus Grandma Tuki and Aunt Melissa, came to visit today. We celebrated her victory over the oral meds. We cheered her bravery. Different neighbors stopped by last week (and brought me dinner!) as well other friends over the last few days. These visits remind her that people haven’t forgotten about her. Even though she’s not responsive when they come, I know it lifts her spirits. I know they’ve lifted mine.

She’s “blown out” all of her peripheral IVs and her arterial line which is awful but overall alright because she doesn’t need them for medications anymore. However, she may have had some infiltration, which means that the fluid leaked out of the vein and infused into the surrounding tissue. Not good. Her left arm and left leg (where former IV lines were placed) are swollen, tender, and causing her a fair amount of pain. Poor, poor peanut.

Despite this, she’s still progressing. We’re hoping that her left and right drainage tubes will come out after the weekend. Hopefully, she’ll be moved to the regular recovery floor soon after. Looks like our Friday goals are being met.

Check, check, and check!

Fontan Recovery: Day 7

Spa day

It’s been one full week since Maddie’s surgery.

So much has happened since last Thursday and at the same time we’ve barely inched along. The past two days since her heart catheterization and reopening of the fenestration have been good because her heart is beating so much better.  But they’ve also been bad because she’s becoming unreasonable about taking medications.

Once she came back to the ICU from the cath lab there was a noticeable change . You could tell immediately that she was improving. She’s been eating and drinking ever since, but she’s low in potassium because of all the pre-procedure fasting and days of barely eating from nausea while she was tachycardic. We’ve spent the last 48 hours trying to get her to drink Pedialyte, Vitamin Water, eat bananas, and anything else we could think of to increase her K levels.

She’s still in the ICU. There are two medications she’s receiving through IV that need to be taken orally before they can move her to the regular floor. She struggles taking anything that might remotely taste bad so it has been a full-time job trying to cajole her into cooperating.

But all that effort to eat seemed lost when we had to force her to take the two required meds by mouth this afternoon. She got so worked up about it that she let her gag reflex take over and she puked the entire contents of her stomach. The picture above is post puke fest. She has a no-water-necessary shampoo cap on her head to get the chunks out as best as possible. It’s just as fun as it sounds.

We’re all fed up. We’re all exhausted. We all want to go home.

Tomorrow is another day. Less drainage, higher potassium, better oral medication consumption. These are all great goals for a Friday in the ICU.

As ever, we are grateful for the many friends and family who continue to offer up words of encouragement, prayers, and hours of tireless service. Slow progress or not, we are truly blessed.

Heart Catheterization Successful

heart cath success

The surgeon just came up to tell us that Maddie’s heart cath went well. They were able to open up the fenestration and place a stent to prevent it from closing again. Only one clot was spotted in the Fontan circuit and it did not dislodge during the procedure.

This is very good news.

The pressure should now begin to decrease and the drainage should slow. But all this has set her back considerably. We are in this for the long haul. It will probably be another 3-4 weeks before she is fully recovered.

She hasn’t returned to the ICU yet. She’s getting a few more things done: her mediastinal drainage (the tube you see in the middle of her chest) slowed enough to pull it out, and we requested that they place a PICC line (peripherally inserted central catheter) in since she’s going to be here for so long and she constantly “drops” IVs because of her small veins. (That way they don’t have to continually poke her to start a new IV, a very traumatic process for little kids.)

Thank you. Thank you all so much for your heartfelt prayers, love, and concern. We are so grateful to know that you are supporting us.

More updates to come…

Fontan Recovery: Heart Catheterization

Sister and brother

Days 4 and 5 have not been very good.

Maddie’s heart rate has been consistently high over the last few days. Her tachycardia, arrhythmia, and the continual drainage from her lungs have led the cardiologists to believe that something is obstructing the Fontan system.

There are three possible reasons for this blockage: 1) A closed fenestration, 2) a blood clot, or 3) the new Fontan hardware could have been pinched during the final closure of her chest cavity.

The fenestration, or hole placed in the new tube they engineered next to the atrium, is possibly closed. The hole acts as a release if the pressure from the fluid change becomes too high. All signs point to closure as a first cause.

Another reason could be a blood clot has formed somewhere in the Fontan circuit. This, of course, is a particularly problematic situation. Clots travel through the circulatory system and can end up in the brain causing a stroke. Blood flow through the pulmonary veins show that this case is unlikely the cause right now.

The final possibility, that her tubes have been pinched, is the worst because it will require surgery to repair. The likelihood of this scenario is far less than the others.

She is absolutely miserable. She’s sweating but has cold extremities and poor profusion.  Her vascular system is dry in that the output of fluid through the lungs is greater than the amount of hydration going in or being replenished. Overall, she is not progressing.

Today we were informed that a heart catheterization would be necessary to go in and examine the Fontan and the fenestration to see if the hole needs to be reopened and widened. That is the easiest and most likely scenario and solution.

She is going in sometime in the next half hour (5:30PM Pacific) and will be in the cath lab for up to 3 hours. Of course she will be fully sedated and will come back into the ICU for recovery.

I know this post is extremely technical but I wanted to write this all down to work it through in my own mind. Hopefully, you’ll get a sense of where she is at, clinically speaking.

She has had heart caths before but this time the risk is increased because of the higher potential for dislodging a clot somewhere in the Fontan system. The 5-10% chance of stroke is weighing on my heart and mind so greatly. We’re asking, once again, for your faith, prayers, and positive energy.

We will post more once she is back in the ICU.

 

Fontan Recovery: Day 3

The lonely walk to the Forest Wing

The lonely walk to the Forest Wing

PHOTO CREDIT: Colin

Seeing your child suffer is probably the worst thing you can experience. Especially when there is nothing you can do but give it time. Maddie is in pain. She’s trapped in a hospital bed with tubes attached at every which point of her body. She desperately wants to go home but the end isn’t even in sight.

If you couldn’t wade through the technical post from yesterday, here is the gist: Maddie’s fontan restructuring has created a ton of extra fluid in her lungs caused by the increase of pressure. Messing around with her heart in surgery (and the blood transfusion she required in procedure) doesn’t help with her body’s normal electrical currents for blood flow. Subsequently, she’s dependent on an external pace maker to regulate normal heart beats and three different tubes coming out of her chest cavity to allow the extra fluid to drain.

None of these adjustments feel good. In fact, they make her quite miserable.

This poor little girl. Today was rough. This morning she screamed out in frustration, using the last of her strength. After that, it was a silent protest of listlessness, lethargy, and general sadness. She is already fed up with being at the hospital and we’re only on Day 3.

She continues to make small strides. Today she kept all her food down and used the bathroom completely. They keep trying to remove the pacer to allow her heart to beat normally on its own but it always ends up plugged back in after she becomes tachycardic again.

And as we suspected would happen, the extra fluid from her chest continues to drain and drain and drain. Pleural effusions, or the fluid buildup in the lungs, are common and expected after Fontan surgery, but because her Fontan is more complex, thanks to her dextrocardia and other abnormalities in her anatomy, the output is greater than they want to see 3 days out.

So, if you’re looking for specific items to pray for to help her, here they are:

  • Maddie’s heart will beat regularly on its own
  • The extra fluid or pleural effusions will dry up quickly
  • She will be comforted and feel peace until it’s time to go home

As soon as her heart can beat without irregularity, she can at least leave the ICU. She’s checked some good things off her recovery list. Let’s hope these next goals get met soon.

As always, we are thankful for your love, support, help, and prayers. They are what keep us going.