Wednesday, August 13, 2014


The Dancing Queen continues to suffer.  Her pain is at its worst in the morning.  She vomits at least once a week.  We have added so many meds to help.  Some seem to be making things slightly better.  She is less swollen these days, but her pain continues without abatement. And her doctors have given up finding an answer and have no other suggestions for help.

This morning, as she cried in pain, writhing on the floor after vomiting, I scooped her up and held her close.  I begged her to tell me she knew I was doing all that I could to ease the pain.  She complied.

I whispered in her ear that I wouldn't stop searching for an answer until I could find her some relief.  She said: "I know, mommy." Her voice was filled with such resignation, such wisdom.  She knows I will probably not find a solution.  And, in that, I have failed.

I realize that it is not my fault that she is in pain.  I know that she doesn't blame me.  But if I can't keep her alive, I ought to be able to keep the pain away.  And I can't.

Isn't one of the main points of hospice to ease the pain of the dieing? Why is it that my dieing daughter is in pain every single day of her life?  Not a little pain, but a lot of pain.

And she's still not eating well.  We've lessened the nausea through regular doses of zofran, but she fills up within a couple bites of food.

Of course, I've done lots of research to try to find some answers since the doctors seem to be of little help.  The one thing all my searches return me to is "Palliative Care of Heart Failure", written by a group U.K. doctors. Much like most things I've read, the guide states that eventually heart failure leads to nausea and vomiting and less desire to eat.  But this guide also provides a suggested aid:
Maintaining adequate nutrition is important and difficult. Small, frequent, easily digested and appetising meals are required. Alcohol can be a very useful means of improving appetite, taking in calories, and improving mood and general self-esteem.
Obviously, the guide is written for adults and giving alcohol to my six-year-old would not only be frowned upon, but illegal. So, I'm left with small, frequent, easily digested, and appetizing meals.  Give me a break! Easily digested and appetizing don't really go together.  The guide's statement that "maintaining adequate nutrition is important and difficult" is a ridiculous understatement and a laugh.  F*** YOU HEART FAILURE!  F*** YOU!

Wednesday, July 23, 2014

The Scream

When the Dancing Queen was in the hospital during her first (or perhaps it was the second) round of her boxing match with pulmonary hypertension, she developed pneumonia following a cath.  She was in the hospital for at least ten days.

One evening, one of my parents came to sit with DQ as she watched "Cars" for the billionth time (or was it "Signing Time"?) so I could grab some food and pee (DQ would not let me leave her eyesight).  That night, I decided to grab some dinner and went to the waiting area to be out of the room that had been my prison for quite some time (admittedly, DQ was more of a prisoner than myself).  While I was there, I engaged in a wonderful, if not sad, conversation with two other heart moms.

The conversation was wonderful because these moms understood me in a way that most other people can never relate and will never relate.  The conversation was sad because it is always sad to be discussing the horrors of children fighting battles against defective hearts and lungs.

Today, I don't remember specifics about what we discussed, but I do know that we each recounted our girls' stories (all of the moms' CHDers were girls). I clearly remember talking about our girls.  It was clear how much we needed our girls and how much we loved them and would do for them.  After an hour, I had to return to DQ so my mom or dad (whomever was there) could head home for the night.

I sat in DQ's hospital room that night thinking about the other moms and the relationships I had with them and all other heart moms.  It is a special relationship, something that cannot really be understood until you are in our shoes (shoes none of us would ever want any of you to walk in).  And I was so happy to be able to sit down with other people in a room and not have to explain the basics of being a heart mom. They just knew. I reveled in how nice it was to have this instant camaraderie and connection.  I looked forward to other "dinners" in the waiting room.

Suddenly, my reflective moment was shattered by the most heart-wrenching scream I have ever heard.  My body tingled just now as I recalled the moment--it was that intense. I knew in an instant what the noise meant: one of the moms I had just talked to, one of the moms who had told me of how hard she and her daughter had fought to be here, had lost her daughter.  The little girl had died.

I wanted to run to my fellow heart mom, to hold her, to absorb some of the pain that enveloped the entire cardiac care unit.  But I couldn't leave DQ.  She was sleeping at that moment, but had been waking frequently and could not handle being in the hospital room without me or someone else she loved in eyesight.  So, instead, I sat in my prison cell, and cried for my new friend's loss.

The next day, when MS came to switch places with me, I tried to find the mom, but she was gone. 

To this day, I've not seen the mom again, but I do think of her often.  I think of her daughter.

And as DQ continues her slow decline toward that same fate, I think of them both more. And that scream, . . .

. . . it haunts me.

Tuesday, July 8, 2014

Please, eat!

I cried today--big fat tears in the kitchen.

In front of the kids.

I don't hide my emotions from them, but I do try to keep it together normally.

Today, though, it was too much.

The Dancing Queen was complaining of stomach pain.  She wasn't touching her food.  I tried every trick I have left to get her to eat.  I gave her barbeque potato chips for goodness sake!  Nothing.  She wouldn't eat a thing.

I begged her, pleaded with her to just eat.

She has to eat!  This has been weeks now without really eating, on top of a lifetime where she has barely eaten enough.  She is looking gaunt. She is feeling sick.  She will only get worse if she doesn't eat!!!!  I can't let her go; she NEEDS food!!!!!!

Dancing Queen, please eat!

"But, Mommy, my tummy hurts too much.  I can't eat."

And then I cried.

TRex tried to smooth things over.  "Mommy, please don't cry.  It will be okay."

It won't be okay!  If she doesn't eat, she will never get healthy again! 

I could see that both kids were upset by my emotional outburst and yet there was nothing I could do.  I picked DQ up in my arms, held her tight.

I know you hurt.  I know you don't want to eat.  But is there something, anything, that sounds good? Please, baby, please.

And she just cried in my arms, "No, Mommy."

Magic Wand

A couple of nights ago, as I laid the Dancing Queen to sleep, I gave her a good dream as I always do to try to keep her happy at bed time and push the nightmares away.  That night's dream involved two of her favorite things--rainbow wands and being Elsa .  After she and I kissed the dream, filled it with love, and smooshed it into her head for safekeeping, she turned to me and said: "Mommy, I wish I had a magic wand that could give me powers like Elsa and make rainbows too!"

You can dream about having magic powers, honey, but I don't know how to make magic and I don't know anyone who can.

"The Chef can, Mommy!"

You think the Chef can make a magic wand?

"I know he can, Mommy!  He makes potions all of the time and magic wands are similar."

Well then, the next time you see the Chef, you'll have to ask him to make you a wand.

"Will you do it, Mommy?"

No, honey.  With something this  important, I really think you need to ask him yourself.

"Okay, Mommy.  I will ask the Chef to make a rainbow wand that makes ice and snow and rainbows."

You do that, sweety.  Good night.  I love you and will see you in the morning.

I totally thought that she would forget about the wand by morning.  She comes up with ideas like this all of the time and forgets about them fairly quickly.  However, the magic wand idea did not fade.  Rather, it grew.

As of last night, the Dancing Queen's wand that will be made by the Chef had grown in power.  She was certain it would turn her brother into Om Nom from Cut the Rope.  She thought that was hilarious.  The wand was going to take her places and get her ice cream and houses made of candy.  She couldn't wait to see the Chef again to ask him.

As the extravagance in wishing grew, I reminded her that magic is not real and that the Chef may not be able to make her a wand.  She was not deterred: "Don't worry, Mommy.  I know the Chef can do it."

This morning, DQ found her own non-magical rainbow wand left over from her rainbow birthday party.  So as not to tax the Chef too much, she decided she could use that wand and all the Chef would have to do is create magic dust for it.  When I asked how she knew the Chef could make magic dust, she quickly responded: "Mommy, he makes potions all of the time.  What do you think magic dust is!" How could I argue with that logic?

At breakfast though, the magic wand became ever more important.  The Dancing Queen was in pain again.  She could not eat because the pain was too great (this is a very common occurrence--we're lucky if we can get her to consumer 40 calories at breakfast).  As DQ laid her head on the kitchen table, she stated matter-of-factly that the first thing she will wish for when the Chef makes her magic dust for her wand is no more tummy aches.  TRex quickly jumped in and said he was going to wish for DQ's heart to no longer be broken.  The children were so sincere and wanted this so much.  We had moved beyond rainbows, houses made of candy, and video games.

I wish you didn't have pain either DQ.  I wish your heart wasn't broken.  But you have to understand that the  Chef is probably not going to be able to make you magic dust.  And even if he does, the dust may not help  your belly or your heart.

"No, Mommy.  The Chef can do it! I know he can!"

Please promise me DQ that you won't get angry with the Chef if he can't make you the magic dust that you want.  I have no doubt he will try, but some things are very hard to do, even for the Chef.

"Mommy, the Chef CAN make me magic dust, but if it doesn't work the way I want it, I won't get angry."

Thank you, DQ.  Thank you.
Having a child with a CHD is like being given an extra sense---the true ability to appreciate life. Each breath, each hug, each meal is a blessing when you've watched your child live off a ventilator, trapped in an ICU bed, being fed through a tube. Each minute is a miracle when you've watched your child almost die and come back to you.
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