Tuesday, February 16, 2010

Mt. O Adventure/Paul Cardall Concert

On Valentine's Day, which is sort of a family event these days- the weather was unseasonably warm so we decided to venture onto the mountain. Up the road from us is the trailhead for Mt. Olympus. I hiked this mountain in 2002. To the top. The south summit of Mt. O brings you 4050 above the trailhead, the summit being 9026 feet in elevation. With Jack, we made it just a few hundred feet up. But he wanted to keep going. As a true, passionate hiker, it warmed my heart to see his love for it and his desire to keep going and most of all, his strength.

Of course, we didn't summit this mountain. Though I hope to someday. I think that will be an incredible accomplishment for Jack. 9026 should be a sufficient elevation for his oxygen needs. But he does get a little worried about the "monster's in the caves"...

"Let's keep going dad!"
"Come on guys!"
Do you want to turn back around, Jack?
"No, let's keep going!"

He would march up that trail and never stop unless we did, we may have taken more breaks than he did. Granted, he did get carried a lot due to rocky terrain, but if it were up to him, he would have done it all himself.

This is one of those moments that I can actually visualize the future, and see our family hiking together, Jack on his own, with aged strength and ability. It will be so wonderful to do these things together as a family without worry.


Last night we had the opportunity to attend Paul Cardall's "Celebration of Life" concert at Abravanel Hall, thanks to our dear friends. This was safely one of the most inspirational concerts I have ever attended. (Those who know me know I've attended a LOT of concerts..)
Paul stood there with a whole new heart pumping inside his body and did nothing but thank other people for their strength, their faith, and their love.

When you go through something like our family has, you think you've gone through every possible scenario, good or bad. But it wasn't until last night that I actually thought to myself, "What if it weren't Jack with this heart problem? What if it were Josh?"

When it is your child, you stand side by side with your spouse and hold to each other for strength and support. When one buckles, the other is there to hold them and vice versa. If you need a moment to cry, or fall apart, there is another person to sit with your child and care for them while you can't. If it were my husband, I don't know how I could possibly have it inside of me to stay strong. Paul's wife Lynnette had to be strong for her husband, AND her daughter. She couldn't go fall into her daughter's arms and ask her if everything would be ok, and ask her to help her see the light at the end of the tunnel.

I have nothing but respect and admiration for this woman and all she has been through. And she deserves nothing more than to stand next to her husband today, that has been through hell and back to get a heart that will sustain him, keep him with his family and allow him to go on to do amazing things and inspire thousands of people.

Last night was so emotional for me. I saw many people that I spent hard days with in the hospital, and their strength during my hard times helped me more than they'll ever know. And if I didn't have my husband by my side I'd be lost. He truly is my source of family strength.

Jack knows what he's been through. He actually looks back at his times in the hospital fondly. He'll place his hands on his heart and say to me "remember my heart? at the hospital?" and he knows he is better and that he was fixed by very special people.

I hope last night brought the same amount of spirit and love to everyone else that it did me, and I thank Paul for bringing this all together. His story truly is a miracle and I am so happy for him and his family.

I hope that the important message about CHD's can be spread, and we can further the progress.

Friday, February 12, 2010

Congential Heart Disease Awareness Week.

Appropriately, CHD Awareness Week falls on the week of Valentine's Day. It is a reminder that this isn't something that happens to a small handful of people, but that there are hundred's of families close by that are connected to someone with a CHD. There is more funding spent on children's cancer research, yet 10 times more children die of heart diseases than from cancer. This week helps us remember how we aren't just lucky that we caught ours early and have been able to stay ahead of it, but that there are things yet to be discovered in this world that will soon help prevent CHD's. I found this poem off of another Heart Mom's page... so I stole it. Thanks Andrea.

What is a CHD???

You passed me in the shopping mall
(You read my faded tee).
You tapped me on the shoulder,
Then asked, "What's a CHD?"
I could quote terminology,
There's stats that I could give.
But I would rather share with you
A mother's perspective.

What is it like to have a child with a CHD?
It's Lasix, Aspirin, Captopril
It's wondering...Lord what's your will?
It's monitors and oxygen tanks
It's a constant reminder to always give thanks.
It's feeding tubes, calories, needed weight gain
It's the drama of eating...and yes it's insane!
It's the first time I held him, I'd waited so long,
It's knowing that I need to help him grow strong.
It's making a hospital home for awhile
It's seeing my reward in every smile.
It's checking his sats as the feeding pump's beeping
It's knowing that there is just no time for sleeping.
It's caths, x-rays and boo boos to kiss
It's normalacy I sometimes miss.
It's asking do his nails look blue?
It's cringing inside at what he's been through.
It's dozens of calls to his pediatrician
He knows me by name, I'm a mom on a mission.
It's winter's homebound and hand sanitizer
It's knowing this journey has made me much wiser.
It's watching him sleeping his breathing is steady.
It's surgery day and I'll never be ready.
It's handing him over, I'm still not prepared,
It's knowing that his heart must be repaired.
It's waiting for news on that long stressful day,
It's praying...it's hoping...that he'll be okay.
It's the wonderful friends with whom I've connected,
It's the bond that we share, it was so unexpected.
It's that long faded scar down my child's small chest,
It's touching it gently and knowing we're blessed.
It's watching him chasing a small butterfly,
It's the moment I realized I've stopped asking why.
It's the snowflakes that fall on a cold winter's day,
They remind me of those who aren't with us today.
It's a brave little boy who loves Thomas the train,
Or a special heart bear or a frog in the rain.
It's the need to remember we're all in this plight,
It's their lives that remind us we still need to fight!
It's in pushing ahead amidst every sorrow,
It is finding the strength to have hope for tomorrow.
And no, we'll never be the same. It's changed our family,
This is what we face each day.

This is...a CHD.

**Written by Stephanie Husted (fellow heart mom)

Wednesday, February 10, 2010

Memory Lane.... or dark scary alley..

My mom is constantly trying to turn my old room into something else, and she has been asking me to clear out my closet. That closet has been a burden on me since 1984. It would always need to be cleaned out. But this time was different. I was deciding what I wanted to keep, and what I wanted to say goodbye to, forever.

In this event, I came across a number of interesting things from my past... some I can explain, some I cannot.

First up. My Troll Collection. Impressive? Yes. And this isn't even all of them. The collage could only hold 9. These things were 7 or 8 bucks, back in the day.

Next, my little Red Riding Hood story doll. That's right.... 3 dolls in one. My mom said she and my dad brought me this from a "far away place"...

My first Cabbage Patch Doll. "Angel Sheryl." She was my first attempt at profession as a hair stylist. Poor thing didn't even have much in the first place. Didn't work out.

My "Clara" dress from when I was in the Nutcracker. It was custom made, and very pretty at one point in time. Now it's just all crinkly and seams are coming undone. Good thing it was a one-time gig.

Yep, this is my Prom picture. That is me, pretending to hit my date with his cane.
Classy stuff.

My mom went through a weird porcelain doll making phase. She has A LOT of them. And for some reason made me and my sister each a porcelain cat, wearing a dress. Laura's is mysteriously broken. But mine isn't..

Not much needs to be said here. "Gosh, it's in such good condition" you're thinking? Yeah that's cause it went unused for a whole quarter while I was suspended for not making grades.

This is one I can't explain. I vaguely remember recieving this, but for some reason, I have an autographed picture of Martha Stewart, except it's addressed to "Leah".. and not "Lisa."

Now these are the things I KEPT. Amongst the things I chucked, were:

A miniature cat-themed tea set, with tea pots that had cat heads.
A little display of miniature things, glued to a shelf, including miniature cokes, miniature books, miniature fruit, and miniature cups. (When I asked my mom if I should keep it, she said what is it for? And I said 'that's what I said when you gave it to me.')
1,346 stuffed animals.
8 wooden dolls made at Girl's Camp.
The Milli Vanilli cassette that my friend and I yanked the tape from when we discovered the "truth" about Milli Vanilli.
Cheer pictures. Not because I didn't like it, but because I looked horrible in them.
A retainer.
Lots of "notes" written in school, about completely unimportant redundancies.

So as you can see, I came out on top, I think.

Now I just have to find a place for all this crap in MY house.

Side note: My American Girl Doll Collection "Kirsten" would have made the photo shoot, but some mysterious liquid leaked all over her, and her St. Lucia's dress. So .... yeah.

Thursday, February 4, 2010

Clean X-Ray

We took Jack in this morning. He is doing much better since starting the antibiotic and upping the lasix. The image showed the pleural effusion was gone. Dr. Su believes that the strep caused the effusion, because the lungs are overworked and inflamed, hence, the slow bloodflow to Jack's lungs caused a bit of back up.

I have yet to contact Make A Wish with this news- we aren't quite out of the woods yet. The Dr. wants us to wait a few weeks before rescheduling Jack's trip. We will go in next friday for another CXR and make sure his chest is clear, and perhaps at that point we can plan a second go at Florida. (We'll be sure to check the weather first.)

I appreciate all the love and concern coming form everyone at this time. It was indeed heart breaking when we had to cancel the trip. But now we just have more time to look forward to it, and we know that Jack certainly earned it.

Stay tuned.

Monday, February 1, 2010

Here's The Deal.

As of 4 hours ago we were getting ready to hop a plane tomorrow morning and head to Florida for Jack's Make A Wish trip. However- a chain of events led us to canceling the trip, upping Jack's med's substantially, and staying home. Here's a summary/timeline of the last week:
  • We finished Jack's antibiotic's that he was on for the Strep throat we discovered 2 weeks ago
  • Jack started getting sick again one week ago, cough, fever, chills
  • We took Jack in on friday and the dr. saw no signs of a bacterial infection, and the strep test was negative
  • Dr. asked us to keep him updated on Jack's condition over the weekend
  • By Monday (today), Jack had not improved and the Dr. called us to bring him in
  • Dr. said we should get a strep test just to rule it out, but it came up positive
  • Dr. also said he was concerned about Jack's lungs, as he could hear something on the right side (Jack's "bad" side) and suggested we go to Primary's for an x-ray
  • Primary's did the x-ray, I tried to read it, find someone to read it, couldn't, and we went home to wait for the results
  • On the way, a cardiologist called to tell us there was some build up that could possibly be pulmonary edema, and that there was in fact a small pleural effusion
So we are now back up to 3X daily lasix, 1X daily aldactone, and his new antibiotic for the returning strep throat.

There is some good news:
  • Jack is home, we aren't in the hospital with another chest tube
  • It's raining cats and dogs in Florida
  • We can watch the season premiere of LOST at the same time everyone else does
  • Make A Wish is allowing us to reschedule his trip
It's incredible that Make A Wish is so accommodating, I mean we called about 12 hours before our departure time and told them the whole thing is off. I'm so glad that they are understanding and allowing us to try again.

The hardest part will be explaining to Jack tomorrow, why we aren't on our way to Disneyworld.

Thank you for all those that listened when I needed to talk to you and thank you to Make A Wish. Today sucked. But Jack is here and in good spirits, which is all that really matters.