Happy Mother's Day!

First of all, Happy Mother's Day to my Mom, my Mother-in-law, and all of you Mom's out there!  I hope you're all having a great day.

I'm sorry it's been a while since my last post.  Everything is fine here and Harlie is doing "well."

We are in a holding pattern until tomorrow.  The doc came to get consent for tomorrow's surgery (if her wound looks good, they will clean it one last time, then close up her incision) and said she is first case.  That's great because that will give her the most time to recover on Monday - hoping that she can go home on Tuesday.  I would really, really like to be home in time to celebrate Murphy's birthday on Wednesday.  It kills me to think he'd have a birthday without me there!  He's only turning 7 - I'm not ready for that yet!

Friday was a busy day.  Heather, our social worker, came in with some Beads of Courage for Harlie.  I'll  talk more about this later - but it was the first time that Harlie picked out her own beads, which is very exciting!  And I really think that turned the whole day around for Harlie.  She was so playful after that!  And Heather brought her some coloring pages and toys.  Harlie colored Tinkerbell and wrote her name on it.

Then, Emily, a Speech Therapist came to spend some time with Harlie.

Then Brandy came up to visit.

It was great to see her and I know that Harlie enjoyed seeing her, too.  Plus, I'm sure it felt like normal again, to have us three hanging out.

Tom surprised me by driving up Friday night.  The plan was for him to come up Saturday afternoon because he had something to do for Murphy on Saturday morning, but he found out it wasn't totally necessary, so he came up Friday night instead.  And since we had a great nurse (I really feel like we've been so lucky this time around) we went out to eat.  Our nurse said she sat in the room with Harlie and charted so she wouldn't be alone.  We went to dinner at the Lebanese Taverna in Adams Morgan.  It has become a favorite of ours.

On Saturday, we had lots of visitors, which was awesome!  My Mom, niece (Maggie) and sister-in-law (Nancy) came up to spend the day.

Nancy, Maggie and Harlie

My mom and Harlie

And Tom's sister (Kristie) was in town with her daughter for a cheering competition.  So, Kristie and Tayne and a friend of hers came to visit, too.

Kristie, Kaylee, Harlie and Tayne

It was a room full of love and laughter for Harlie.  I know she loved the company, even if she doesn't always show it.  I know that it has to be so much more enjoyable to hang out in a hospital room full of laughter than one that's quiet and boring.

The weekends in a hospital can be so depressing.  It is so quiet and food is slim pickin's.  It's easy to start to feel down.  So, the fact that a Saturday was like that was great!  Tom and Maggie when to get Five Guys burgers for us all for lunch.  Yum!

After they all left, we went to dinner.  We went to Marvin (named after Marvin Gaye).

Marvin, on U Street

It was so good, I can't even put it into words.  Seriously one of the best meals I've ever had.  We had the Normandy Moules Frites (mussels and fries).  The fries are served on the side with three dippers - ketchup, wasabi mayo and curry mayo.  They sound disgusting, but the wasabi and curry mayos were awesome!  The mussels are served in a big bowl and were in a creamy sauce with chunks of smoked bacon and bleu cheese.  Seriously - the BEST thing I've ever had.

Then, as my meal, I got the shrimp and grits and fried oyster appetizers.  So, so good!  Tom got the fried chicken and waffles.  Weird combo I think, but he said it was awesome.

And we just had to get some drinks, of course!  I got a dirty martini, which was perfectly made  And Tom had a Goose Island Fleur beer.  It was really good.  After we finished eating, we took our drinks to the rooftop bar and stood around people-watching and just enjoying being in the fresh air.

Anyway, it was a fabulous dinner with the best service ever, and we really enjoyed the whole experience.  And if you're ever in DC - I highly recommend it.

We have the same nurse today that we had yesterday and she's great.  She only has one other patient right now, so we are going to go get some lunch.

Oh, and I finally started reading The Help.  I just started it last night, and I am hooked!  It is so good!

Tom is going to leave to go home sometime this evening.  And hopefully, he'll have to turn around and come back and get us on Tuesday.  My fingers are crossed!  She is so over being in the hospital!

This morning, this is what the cafeteria looked like...

So now you can see how great it was to have a room full of visitors!

That's it for now.  Please keep your fingers crossed that she's been healing great and all will go as planned tomorrow!

Thanks so much for all you support and love!  And Happy Mother's Day!
~Christy

Recovery Update

Harlie is doing well, all things considered.  Each day she shows another small improvement.  

I saw her smile yesterday with her nurse, Brandy.  She's clearly still mad at Tom and I, because she doesn't want to smile with us.  But, last night after she was in bed, I went upstairs to check on her and we played a little bit like we used to and she gave me a smile.  She still won't sign that she loves me.  So, while we were playing I took her hands and "made" her sign it to me and she actually laughed.  I made a big deal of saying, "oh thank you, Harlie"!  And she seemed to get the humor of it.   

Here is a picture of Harlie showing Tom her new beads.  Children's National Medical Center in DC has a Beads of Courage program for their cardiac kids.  She earns a bead for certain things (like getting a chest tube put in, heart surgery, ivs, etc.).  I'll have to show you more about it later.  Here's the post when I first wrote about it, but the links don't work anymore.  She earned at least 30+ beads this trip.  And some of them are glass beads and they are beautiful!

Here's her in the stroller getting ready to leave the hospital.  Her happiness was more subtle than I expected.  No smiles.  But her eyes lit up and we could tell she was happy. 

She seems to be able to stay off oxygen during the day.  She was on it for the first couple of days, but it looks like she's okay now.  We are just spot checking her throughout the day.  If she stays on the monitor (which is wrapped around her toe) she doesn't want to get up and walk around.  So that's why we're spot checking her.  


She still hasn't walked around too much.  Just from the couch to the DVD player to put in another movie.  She's even taken some naps on the couch.  And this girl hasn't napped in years!  


There have been a couple of times she has made me hurt.  She doesn't want to take a bath.  She just shakes her head "no" and when I insist she hangs her head and cries in silence.  Then she holds her shirt down so I can't take it off.  Ugh.  She kills me.  And she loves her baths!  Well, she used to anyway.  I'm sure that will change in time, I guess for now she feels vulnerable without her shirt on?  


She scratched her incision the other day while she was about to get in the bath.  She looked down at her incision and just started to cry.  I can't imagine looking down and seeing that kind of boo-boo.  It must look so scary to her.  And it must still hurt.  


She still doesn't want to cough.  So her secretions are still a problem.  They are very thick and it is difficult to get them out.  Not to mention that she pushes us away most of the time.  And that is something that she's never done before.  She's always been very cooperative with suctioning.  


A small step showing us that she's getting back to herself was when she pulled away the trach collar for us so we could suction her.  I do think that even though she's fighting us sometimes, she does still remember that she needs it.  


I have more to tell you, but have run out of time.  I took a couple of days off from my computer, but hopefully will be able to get back into the swing of things and blogging more regularly again.


Thank you so much for all your support!
~Christy  

Ahhhh...Post-Op Day 2

She is finally resting comfortably. It was so wonderful to walk in the door and see her like this...



Of course, when they did rounds they said she was resting TOO comfortably. Go figure. They have weaned her from most of the drugs except the new one they gave her last night (which obviously did the trick). The new drug is also called Precedex, which is a lot easier to spell and pronounce than Dexmedetomidine. Whew. Anyway, she can't leave the ICU until she's off the Precedex and she doesn't have an arterial line anymore. If that arterial line comes out, she could bleed WAY too much, so she needs to have a nurse in the room all the time to make sure that doesn't happen. That was why yesterday was so awful for her nurse. She was very concerned that would happen with all her thrashing about.

They've turned off her pacer for now and she seems to be doing okay. They are leaving it hooked up, just in case, but hopefully she won't need it again. I've asked her cardiologist why we don't just hook up the darn thing for once and for all so we don't have to worry about it anymore, but I can't remember what she said. We had that conversation back in April. I guess I'll be asking her that again soon. Oh, and she can't leave the ICU with the pacer hooked up, either.

The team that rounded said that she drained 120 mls of blood in the past 24 hours (30 mls since 7am today). That's over their 100 mls limit, so I thought for sure they would say they need to stay in. But, they said they were going to take them out. I was happy about that. But, then they said they needed to get the surgeon's blessing and he said no. So, the chest tubes will stay in for at least another 24 hours. I'm not really that disappointed because I would rather be absolutely certain that it's safe. The last thing we need is to have to put them back in later!

Plus, her history of a chylothorax is still in the back of my mind. She had it after her last heart surgery when she was six months old. They said that complication is unusual after the Glenn (the procedure she had at that time). And it showed up three weeks post-op (which is also unusual) and caused her to go into respiratory distress (the chest cavity fills up with chyle making it difficult for the lungs to inflate, which makes it difficult to breathe, of course). We just happened to be on the way to the pediatrician at that time and her doc had to call 911 when we got there. It was very scary. And she ended up in the hospital for eight more weeks waiting for things to heal.

Anyway, while they say a chylothorax is unlikely after this particular surgery (DKS), I'm not completely comforted. And it would be nice if they could start her feedings while she still has the chest tubes in to see if they drain milk. Now the last time it took weeks to show up, so I know it wouldn't be that easy. But still, if she has the "world's worst scarring" maybe it would be different this time around.

She hasn't had anything in her belly since 10:30pm on SUNDAY night. And today is Wednesday! They said that we could start to give her some Pedialyte slowly, then gradually go to her normal feeding schedule. But, it takes forever for them to put in the orders and get things moving.

Oh, and she earned 26 more Beads of Courage from Friday to Tuesday! I will try to take a good picture of them when we get back to the Ronald McDonald House tonight, so you can see them. I love the Beads of Courage and am so glad that they started the program here. One day it will be so great to explain them to her and see how she likes them.

Well, that's it for my update for now. I'll update again tonight. Thank you for all your wonderful messages. I know it must be hard to think of something to say, but just knowing that you're thinking of her, and us, makes all the difference. Sometimes when I get overwhelmed with all of her complexities, I want the world to stop. It is hard to think that everyone else goes on about their daily lives. I know that's silly and juvenile (and impossible, duh!) but that's the way it feels to have this kind of life. I don't feel this way when we're home and she's playing. So, even though you can't stop everything, just knowing that she's in your thoughts makes me feel less alone somehow. So, thank you for that.

Beads of Courage

I am so excited! The children's hospital in DC has started a Beads of Courage program for cardiac kids (click on the play button on the bottom left). I think the Beads of Courage was originally done for cancer patients. They now have a cardiac program, which I think is great! Each bead represents a procedure, cath, hospital stay, ICU admission, surgery, etc.

So, yesterday our social worker, Kristen, got her all caught up. The beads between the letters of her name (there are six of them) are called Hundred Beads. Each one of those represents 100 beads. Otherwise getting her caught up would deplete the bead supply and take forever to figure out. They have a formula to help - like each four week hospital stay (which has been an ICU stay 99% of the time for Harlie) for a cardiac child earns the child an average of x amount of beads (for sticks, overnight stays, tests, etc.). So, that's how Harlie earned six of them. The white ones with the heart represent open heart surgeries. And there are some really pretty ones there that mean other surgeries. The beads after the smiley face bead are what she's earned since this admission. I wish I could take a better picture so you could see. I think if you click on the photo it gets bigger. The next time we have a photo session with Paige, I'm going to get her to take a good picture of it.

I think it's a great way for people to visualize just how much these kids have to go through on a regular basis.

Well, I'll have more updates soon. Just wanted to share the exciting news!