Thursday, April 30, 2009

Cooper

Just playing with the movie maker. I don't give Cooper much air-time. So, here he is...



Wednesday, April 29, 2009

We have an appointment.

Wow. So much to blog, so little time. I'll just start with a little one.

Pulmonary Appointment Update

So, when I originally called to get Harlie an appointment (and they told me that July was the next available appointment) I left a message for her doctor to call me back. I gave him two days, but didn't hear from him. In the mean time, Harlie's pediatrician was calling the head of the department. On Monday, I tried calling the doctor again. I got a nice person who confirmed that the next available appointment wasn't until July. I asked her how in the world that could be? What about sick appointments? She said that they are telling patients to go to their.... PEDIATRICIAN!!! For real? Seriously? Who came first? The chicken or the egg? Great. Now I'm confused.

So, I laughed out loud. Really. I asked her for the doctor's e-mail address, which she kindly gave me. Hung up and cranked out a nice e-mail, kindly asking for her doc's help. And that is for real - it was nice. I promise. I find that you catch more flies with honey...

Well, he promptly responded. And we now have an appointment to see him on May 11th. I suppose they only give "sick" appointments to the ones who raise a stink. In his defense (because I like him) they lost two docs (well, a nurse practitioner and a doc) just recently. So instead of having four people to see, there are only two now. And one doesn't count in my book, because I wouldn't see him - period. So I'm sure he's working his butt off.

Whew! Glad that's over. Now on to the next thing...

Tuesday, April 28, 2009

Psssst....

Today is Tom's birthday.

Happy Birthday!

Love,
Christy

Friday, April 24, 2009

We have a new date.

Okay, so we're going to try this again. Our next scheduled attempt at the Fontan is Monday, June 8th.

Hopefully that will give her plenty of time for her lungs to recover and be strong for the surgery. She is supposed to see her pulmonologist (DC docs want her to be seen within one week of her discharge, on Tuesday). I called on Wednesday and was told that the next available date was in JULY!!! Can you believe that? I can't begin to tell you how angry that makes me. 

The kids that see a pediatric pulmonologist have issues with their.... lungs. Just their lungs. Eh, no big deal. Seriously? They can't organize their practice to see sick kids???? Granted, there are very few pediatric pulm docs in the area. It's really quite sad. Of course you wouldn't know that until your kid needed to see one. And most people don't need that kind of service. But, what gets me is that clearly there is a need. If you're schedule is booked until July, and you're not leaving any room for sick kids, follow-ups after hospital discharges, etc., then we need more docs.

Just starts me on my rampage of how inadequate the health care is here in Richmond. Most locals think we have a children's hospital here. But we don't. What is called "Children's Hospital" is a long-term care facility and therapy service. Your kid wouldn't be rushed there after an accident.  

And need I explain how good it would be for our economy to have a full-service children's hospital?  All those jobs, all those people needing a home to live in, places to shop.  

Anyway, I took Harlie to see her pediatrician yesterday and I talked to him about my inability to get her in to see her pulm.  He said he would make a phone call for me.  It's just so frustrating.  Harlie's gotten pneumonia twice in a matter of weeks, and she has to have major open heart surgery - which greatly involves her lungs - and she has less than the average person (3 lobes compared to 5).  If she were to get pneumonia while recovering from the Fontan, it could be life-threatening.  And her pulm can't work her in?  Are you kidding me???  

I just need to know before going in that were not dealing with a bigger issue involving her lungs.  And I can't take any advice from her cardiologists about her lungs.  Just as I can't take any heart advice from her pulmonologist.  So, I really need her pulm's blessing before her surgery.  

Hopefully, her pediatrician can get her in.  I suppose I could take her elsewhere - like DC - I'm sure they could work her in.  But, they don't know her history.  I mean, I could tell them and bring them up to speed, of course.  But her pulm here knows her.  He saw her during her 8 week recovery at MCV after the Glenn and he's seen her ever since.  And he knows me.  And sometimes I think that's just as important.  

That's it for today's vent.  Be sure to tune in tomorrow!




Tuesday, April 21, 2009

We're Home!

Just a quick one to let you know that we're home. She seems happy to be in her own bed. I am so happy that our night nurse is coming tonight. I am looking SO forward to a good night's sleep in my own bed, too.

Have a good one!
Christy

Tuesday Update (11am)

Well, they rounded on her about an hour ago. She's only had low-grade fevers for over 24 hours, so they are considering letting her go home. Woo Hoo! Now, I don't want to rush her out if that's not what's best for her. But they are telling me that switching to oral (well, through her g-tube) meds will be okay at this point. I do think that she always seems to improve faster once she's home and happy.

She had a decent night last night. She seemed to sleep soundly till 4am. Which I was very thankful for. Then after that, she needed suctioning every hour. Sunday night she needed suctioning every single hour during the night! Once she woke up for the day (at about 7am) we got dressed and I took her with me downstairs to get some breakfast. (Thanks, Jennifer!) Since I can't leave her alone, it was stressing me out how I was going to get food. So, taking her with me was the perfect solution!!! Plus, I think it did her some good to get out of the room for a bit.

So, the rounding doc is supposed to talk with her cardiologist here to make sure that she's fine with discharging us. I'm pretty sure that she'll be completely comfortable with that. Hopefully we'll get the final okay soon, so Tom can come back and get us. He left last night to try and get some work done so we wouldn't be taking too much time off. We need to save his time for her surgery... whenever that time comes.

Even though this has been another short stay, I'm anxious to get home. Cooper is army crawling all over the place and I'm pretty sure he's going to start crawling "officially" any day now. I really don't want to miss it! Tom weighed him on our baby scale the other day and he weighed 19 pounds and 5 ounces! He's only 6 months old! We are not used to having a fat baby, but we are loving it! We should start taking bets on when he will surpass Harlie (she's still 24 pounds). He's only 5 pounds away. Maybe when he starts moving around more his weight gain will settle down a bit.

Anyway, I'll keep you posted! Wish us luck!

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!

Harlie's Heart 101

For those of you more interested, you can read this very long, medical-heavy entry that talks more about Harlie's heart defects and how her heart is different from a normal heart. For those of you less interested, just skip it.

Here is a list of her heart defects:


1. Congenitally Corrected Transposition of the Great Arteries: Her heart was formed in a mirror image. Meaning what's normally on the right side of the heart, is on the left, and what's normally on the left side, is on the right.


2. VSD: Ventricular Septal Defect: An opening between the left and right ventricles which causes the blue and red blood to mix. In a normal heart there is no opening and the blood is completely separate.


3. Hypoplastic Right Ventricle. Her right ventricle is smaller than it should be.


4. She has two small Superior Vena Cavas (SVCs). In a normal heart, there is one, large SVC which carries the blood from your head to the right atrium. It was this defect (combined with defect #3) that prevented the normal "fix" for her CCTGA (called a Double Switch) and lead us to the Fontan.


4. Subaortic Stenosis: A narrowing of the passage way from her right ventricle to the aorta (blood going to the body). They said that her blockage is from tissue that has grown over the passage way.


5. Intermittent Second Degree Heart Block: In most cases of CCTGA, the electrical connections in her heart are compromised. Often times, this requires a pacemaker. They anticipated this at her birth and during her first heart surgery at 4 days old, they placed the pacemaker leads for future connection. It is unknown at this time if she will need the pacemaker to be connected after the Fontan.


The Normal Heart

In a normal heart, the right atrium receives blood returning from the body. There is a "pipe" that carries the blood from your head called the Superior Vena Cava and a "pipe" that carries the blood from the rest of the body called the Inferior Vena Cava. Both of these pipes empty the blood into the right atrium. This blood is low in oxygen (blue).

It flows into the right ventricle, and is then pumped to the pulmonary artery to the lungs. In the lungs it picks up oxygen (red) then flows through the pulmonary veins to the left atrium and into the left ventricle. It is then pumped out of the aorta to the rest of the body.

In Brief:

Blue blood from body (IVC) and head (SVC) go to right atrium, to right ventricle, to pulmonary artery, to lungs, to left atrium, left ventricle, aorta, then body. Repeat. For many, many, many years!

Right now Harlie's blood flows like this:

Blue blood from body (IVC) to left atrium, to left ventricle to right ventricle to aorta, to body (notice NO lungs are mentioned).

And

Blue blood from head (SVC) to lungs, to right atrium, to right ventricle to aorta, to body.

The Bi-lateral, Bi-Directional Glenn

In her 2nd heart surgery (called the Glenn) the surgeon disconnected her SVCs from feeding blood into her left atrium. Then he connected her SVCs to the pulmonary artery, so blood coming from her head would go straight to her lungs to receive oxygen and then would go to her heart to be pumped out to her body.

Basically, in a normal heart there are two ways for the blood to leave the heart - the pulmonary artery (going to the lungs) and the aorta (going to the body) and they leave from two different ventricles. The small ventricle (right) pumps to the lungs and the large ventricle (left) pumps to the body.

In Harlie's heart, there is only one way for the blood to leave her heart - the aorta (going to the body). Because she essentially only has one ventricle because of her large VSD.

The Fontan

In the Fontan procedure, the surgeon will disconnect the IVC (blood coming from her body and feeding into her left atrium) from her left atrium and will connect it directly to her pulmonary artery so that blood coming from her body will go straight to her lungs to receive oxygen, then will go to her heart to be pumped to her body again.

So, her new circulation will go like this:

Blood from body and head will go to pulmonary artery, lungs, right atrium, her one ventricle and out the aorta to her body. Repeat. For many, many years.

The Damus-Kaye-Stansel Procedure (DKS)

The DKS is the creation of a connection (made of donated tissue or Gore-Tex) between her left ventricle to her aorta. It will give the blood another way out of her combined ventricles to the aorta, to her body.

That's it! Got it? Piece of cake.

Monday, April 20, 2009

Pneumonia

Well, the official word is that it is pneumonia. It's a little scary that it is in the same place, her right lobe, as before. They say it is a concern that it could be due to aspirations, which would be terrible, and wouldn't make much sense. She's never had an issue with aspirations before, so I don't know why it would happen now, especially with no changes that would cause it. So, the theory is that maybe we didn't give her long enough to heal from the last pneumonia before putting her through another cath, then another cath - all within several weeks.

When we get home I need to get her in to see her pulmonologist. I want to make sure that we give her plenty of time to get over this before doing the surgery. We might even consider waiting till June. The only negative would be that it would probably start a domino effect - moving the rest of her surgeries back, as well.

I am very thankful that it presented when it did, versus several days later. If she had the Fontan, and then the pneumonia happened, it could have been disastrous. It's during times like these that I believe she is really meant to be here. She has racked up quite a list of things that could have easily gone the other way (the way we don't want to go) yet, she has survived everything.

So I'm not rushing her out of here. I think the more IV meds she gets, the better she'll be in the long run. They said that she has to go 24 hours with no fever before they will send us home. She had a fever Sunday night at 6pm. They gave her Tylenol and she went without a fever til 12:30pm today. 18 hours. So close! Hopefully a few more doses of the IV meds will do the trick. I do know that she's starting to feel better. She finally started waving Hi and Bye to people today. And blowing kisses.

I gave her a little shower with the hand held thing tonight. While I was doing that her nurses changed her bed sheets. I guess everything made her feel good, because she perked right up and really fought going to sleep. She's definitely coughing a little less. Last night she woke me up at least once an hour, sometimes more. I'm really hoping that tonight is better.

I'll have more tomorrow. Thanks for all your support!!!
Christy

The Latest...

I can't believe this, but it looks like she has pneumonia. Again. Isn't that just lovely. I say "looks like" because we haven't received the official word. And all of her symptoms are different than they were a month ago when she had it. So I think it's still possible it could just be a collapsed lung or something. Although her white blood count is pretty high (27), which indicates she's fighting an infection.

Last night in the ER, they gave her Tylenol (around 7pm). Then they started some IV meds during the night. The nurse just took her temp, and she does not have a fever, so that's good.

Dr. Jonas just stopped by to see us. He said that he wants to wait at least a couple of weeks for surgery. I asked him if it would be okay to wait a month. He said that would be fine. But we can't wait monthS (not that I wanted to). Now that we know what's causing her pressures to be high, we need to go on ahead and get that corrected sooner rather than later.

Now we are just waiting to find out more information on what's going on with her now, and the plan of action. If she has pneumonia and she's on meds, I'm hoping that they will let us take her home as soon as she can get her meds through her g-tube. Hopefully today or tomorrow morning.

Last night they wanted to draw more blood (hours after her awful IV experience). The resident said that the blood they took in the ER clotted. The lab wanted this blood for the blood bank so they could have blood ready in case they did the surgery. I asked her what the likelihood of them doing the surgery was and, of course, she said she didn't know. I find it so frustrating that the residents at night can't use some common sense. They are so afraid of making a commitment to a statement. She has a fever and it "appears" that she "might" have pneumonia, "probably". Nice. What in the world is a mom supposed to do with that kind of "information?"

Anyway, considering she wasn't supposed to be in the ER the night before surgery giving blood in the first place, why did they need it? The resident told me that the blood they took on Thursday is only good for three days prior to surgery. And having surgery on Monday was four days. But, she wasn't supposed to be here earlier than 6am, so what gives? Why take it at 11pm while she's resting soundly? Especially considering she's most likely not having surgery anyway!!!

So, I thought about it for a little while and when she came back to stick her, I said "no." I said it doesn't matter what they say in the morning, I am not comfortable with her having open heart surgery while she's sick. Besides, I know they aren't going to do it. Even if the resident says she doesn't know. I know. Maybe she'll know for the next patient. I just couldn't let her stick her for no good reason. I hope that one day Harlie will know I tried to lessen her pain whenever I could.

Anyway, hopefully they will round soon so Tom and I can make some plans. And then we'll take her home and we'll take a break from worrying about this surgery and hopefully, she'll be all better when we set the 4th date. It jut figures. She goes two and a half years without ever getting pneumonia and she gets it twice, one month apart during the Fontan scheduling. Talk about some luck.

Later,
Christy

Sunday, April 19, 2009

In DC hospital

So, we decided to take her to the ER at the Children's Hospital in DC. It took us most of the day to unpack from Friday, do laundry and then re-pack. It wasn't easy considering I had no idea how long of a trip to pack for. I packed on the heavy side in case you're wondering.

After a very depressing 30 minutes in the ER (lots of people yell at their sick kids, which was painful to witness) we were whisked away by some good ER nurses. Once they found out she was a cardiac kid with some heavy breathing, they kicked into high gear.

Then we went through an hour of torturing Harlie. I swear, that girl is the strongest kid I know. I hope she doesn't suffer long-term consequences from all that stuff. It took 3 limbs and 4 tries till they finally got an IV. Then they had to take urine and then get x-rays. She promptly passed out and is sleepy soundly now.

She's been admitted to the Heart and Kidney Unit. This building is new since her last stay here and the rooms are really nice. In fact, I am using their computer that is also the flat screen TV. The only problem is that I can't see the screen that well. If I have typos, that's why. Anyway, Tom went back to the Ronald McDonald House and I'm staying here with Harlie.

As of right now, they told me that the surgical team knows she's here and that she has a fever. But, they are keeping her on the schedule for right now. I guess they want to see what her blood work shows first before making any decisions. I don't know. On our way up here this afternoon, Tom and I were talking about how we feel about the surgery getting postponed several times. I'm starting to think that we all need a break from thinking about the Fontan. And Harlie's veins might need a break, too. So, maybe if they don't want to do the surgery for a week or so we will ask them if we can wait till mid-May. But, we'll just have to see what they say in the morning before making any decisions. I think Tom and I will be fine with whatever happens. We're just tired of stressing about it.

So, as soon as I know something and can get to a computer, I'll let you know. A friend of mine suggested I use a ghost writer when I can't get to a computer. That sounded like a good idea to me. That way I don't keep you in the dark for too long. It is so wonderful to know that you care. Thinking that people are waiting for me to update the blog really helps my spirits in some weird way. Whatever works I suppose.

Well, that's it for now.
Christy

MAD!

Well, Harlie woke up with another fever. It just keeps coming back. I've called the docs in DC. The doc I spoke to is going to let the team know, but I think it's a pretty safe bet that surgery will NOT happen tomorrow.

I'm mad. Why? Why can't something, anything go smoothly with Harlie?? This was our 3rd date for the Fontan for crying out loud?!

And now what do I do? I called the hospital in DC and spoke with the doc there. Harlie needs to be seen. But by who? The ER here in Richmond, or in DC? Now we're back to where we were weeks ago. We need to find the source of the infection. Again. She was fine before her cath. UGH!

Give me strength!

Saturday, April 18, 2009

Surgery Consult

Yesterday, we had our consultation with Dr. Jonas, Harlie's heart surgeon. I'm afraid that there's no way I can explain properly what's going on and what's going to happen. I would need pictures.

Basically, the subaortic stenosis must be corrected, or alleviated in some way. This obstruction is tissue that has grown over the entrance to her aorta and is making it difficult for blood to leave her heart to go to her body.

The cath doc told us that the surgeon would most likely cut away the tissue that was causing the obstruction, and that it could grow back in time.

When we spoke with her surgeon, he had a different plan. Instead of removing the obstruction, he is going to create a whole new path for the blood to leave her heart and get to the aorta to go to her body.

With her main heart defect (cc-TGA), the electric rhythms of her heart can be unstable. And a huge risk with cutting the obstruction away would be that it could damage her electric connection between the ventricles and atrium, making her pacemaker dependant. This we clearly do not want to do. It is one thing to have a pacemaker that helps your heart beat on occasion, another thing entirely to have the pacemaker telling your heart to beat all the time. And it is possible that the obstruction would just grow back, and that would mean another open heart surgery.

So, his first preference to fix the problem is to create a whole new connection from her left ventricle to her aorta (to give the blood another way out). That procedure is called the Damus-Kaye-Stansel procedure or DKS. He will use donated human tissue to make the passage way (thanks to all those wonderful people who donate their organs!) If that isn't available then he will have to use Gore-Tex. Real tissue is so much better because it closes up better around needle holes. Nice thought, huh?

I have to admit that I am not happy about this obstruction and the extra procedure he has to do. And I will be even more unhappy if he can't do the DKS for some reason. I really don't want her to be pacemaker dependant.

While signing the consent form for the surgery, he told us that a normal Fontan operation is a fairly routine surgery (it is one of his most common surgical procedures) but that adding the DKS makes it complicated. He said that the normal risk of brain damage or death is about 3%, but by adding the DKS, and the fact that Harlie has more issues, it is slightly higher than that - closer to 5%. Before Harlie came along, numbers brought me comfort. You have to go with the odds. But, prenatally, Harlie was given a 5% chance of living, and she did - so I don't consider 5% that small anymore.

He did give me a glimmer of hope that maybe she won't develop a chylothorax (like she did after her 2nd heart surgery, the Glenn). If you click on chylothorax, it will take you to one of my blog entries where I explain what it is - just scroll down a ways and you'll see it. Hopefully, relieving the pressure from obstruction below her aorta will lessen the chances of it happening. If it does not happen, then we could potentially be home in 2 weeks!

We're Home, Briefly.

Just a quick one to let you know that we're home. We had our consultation with her surgeon, Dr. Jonas on Friday. I have been trying to write about it, but it is very difficult. That will be coming soon, I hope.

Yesterday, Harlie was a having a hard time getting back to herself. She had a fever and was working very hard to breathe. They said the fever was normal for right after a cath, so at first I wasn't worried. But when we got her home it was 103.5. And it wasn't really responding to Tylenol or Motrin. By 10pm it had come down to 102.8. But at 3am, it was back up to 103.7! Her right lung was VERY wheezy, which I don't understand why that would happen after the cath. She's had four other caths, and she's never had as hard of a time recovering. Anyway, so we've been giving her breathing treatments every 4 hours since last night and this morning she's improving. She has no fever now, which is great. And she seems to be getting back to her normal self.

Hopefully, we'll be able to get outside and let her enjoy the weekend. Monday morning will be here awfully quick. We have to have her at the hospital at 6am. We are going back to the Ronald McDonald House on Sunday night.

Well, I'll have more info later.

Thanks,
Christy

Thursday, April 16, 2009

Cath Results

Well, the day is over and I'm back at the RMH for a good night's sleep. Tom's staying with Harlie in the PACU (post-anesthesia care unit). Overall, we had a "great" day. I'm sure Harlie wouldn't agree. But, with everything we did today, we think it went very smoothly.

I was so impressed with the lab tech that drew Harlie's blood. She got in on the first stick and was able to get all the blood she needed! I couldn't believe it. At first, she (the lab tech) seemed pretty tired and bored. I'm sure it is no fun sticking kids all day. But she really perked up after I told her how impressed I was. I told her that it always takes several people with a lot of fighting and sticking and I was so very thankful that she did it so quickly (less than 10 minutes!) and with only one stick. She was great and I really wanted her to know that. What a difference she made for Harlie, and for us.

Anyway, she had a busy day and I'll go into more detail later. It is late and I want to be back at the hospital early tomorrow so I need to be brief.

The cath went well, overall. They were able to get access through her neck (UGH!). Located conveniently behind her trach ties (please note the sarcasm). Soon they will have to go through her liver (and I'm not joking). This was her 5th heart cath and it has taken its toll on her veins. And yes, in case you're wondering, she will definitely have more caths in the future.

The cath did answer their questions about her subaortic stenosis. There is tissue that has grown around the opening, causing an obstruction. It will need to be cut out during her surgery. He said that it could grow back and require surgery again in the future. Great. But we'll get more info from the surgeon when we talk to him tomorrow.

Unfortunately, the obstruction has caused a negative chain reaction through her heart and lungs = high pressure. If you think of your circulation as plumbing - it might help you visualize what that means. Since her ventricles have to work harder to pump the blood past the obstruction, they don't adequately relax between pumps. When the ventricles are relaxed, that's when the new blood coming from the lungs fills them to be pumped the next time. Since they can't fully relax, they aren't able to fully fill, causing a back up. Plus, since your heart is a muscle the more it works, the harder it gets, which is bad.

I can't remember exactly what he said, but... something about if the pressures are 15 or less, that's good and the Fontan can be done. If the pressures are 21 or higher, then that's bad and they can't do the Fontan. Her pressures are 19!!!

Although they are closer to the too high number, he said we really have no other option but to go ahead with the Fontan. He believes that by removing the obstruction (subaortic stenosis) that the pressures will decrease and her heart won't have to work so hard in the future. He said the only other option would be to remove the obstruction (open heart surgery) and wait a year, then see if the pressures have decreased, and if so, then do the Fontan. But that would mean adding another open heart surgery and why do that if they can do it at the same time. The only real negative (I think) is that her recovery from the Fontan could be harder on her as her heart and lungs adjust to all the changes.

Well, that's enough for tonight. Tomorrow she'll get a chest x-ray, another EKG and we'll meet with Dr. Jonas, her surgeon. Then we get to come home for the weekend.

Take care,
Christy

The Cath is underway.

Wow have we had a busy day! I looked at my watch at 11am and it felt like it should have been 5pm! Anyway, they took her back for her cath at noon. We got to carry her there, sit with her in my lap and I held the tubing that went on her trach so she could drift off to sleep. It was totally AWESOME!!! So much better for her and for us. Way less traumatic. I wish every procedure/surgery, etc. could be like that.

Well, I want to get back to the waiting area (I just ran to the library really quick to update), so I have to go. I will give more details tonight - complete with pictures, of course.

Thanks for all the prayers and well wishes! We are very thankful. We know the next few weeks will be rough, so keep them coming!!!

Take care,
Christy

Ronald McDonald House

We arrived at the Ronald McDonald House (RMH) last night shortly after 8pm. At first, Harlie was a little intimidated and didn't want me to put her down. I'm thinking the big giant gorilla next to the check in area had something to do with it.



Then we walked through a few hallways lined with many, many toys (the picture doesn't do it justice) on our way to our assigned room.

They aren't very busy right now and we got a whole wing to ourselves, which rocks. As of right now, we don't even have to share the bathroom. Woohoo!

As soon as we got to our room and I put her down, she made a beeline back to the toys, signing "play" the whole way there. She got a power nap on the way to DC so she was charged and ready to go! Unfortunately there are a LOT of stairs to get into the RMH, so Tom got quite the workout unloading the car. You really have no idea (well, some of you do) how much stuff we have to take with us when Harlie has to sleep out of our home. Crazy!

Anyway, once I gave her a little while to walk around and get comfortable (she ended up going up to the gorilla and pointing and signing "gorilla", so she was fine after that) and play it was challenging to get her to stay in the room. But it was late and she needed her breathing treatment and sleep for an early morning and big day ahead.

As you can see, it didn't take long for her to get comfortable...


And I had nothing to do with that pose. She did that all on her own. She cracks me up.

Our room is right next to the one we had right after she was born. It is so awesome to see Harlie walking the halls where we were postpartum. I remember so much about that time and what a difference to have her with us! We are so much happier!


Well, we must get ready to go to the hospital. We have a very long day ahead of us. I will try to update the blog as I can.


Thank you for all your support!
~Christy

Tuesday, April 14, 2009

New Surgery Date

Quick one tonight...

Just wanted to let you know that they are going to do her cath, TEE, and all her pre-op stuff on Thursday. She will stay overnight and we will come home on Friday. Then we will go back up on Sunday night and her surgery will be Monday morning.

I'm sure I'll have many long posts in the near future, so I'll give you a break tonight with this short and sweet one.

Thanks for your support!
~Christy

Monday, April 13, 2009

Not a dull moment...

Where to start? I got a call tonight from Harlie's cardiologist in DC. I could tell immediately that something was amiss.

Basically, they had a conference this afternoon to discuss this week's cases. They went over all the data on Harlie (her last two heart caths - August 2008 and last week's - her last two echos - a few months ago and I don't remember when). In short, the images do not answer their concerns, and they need more info before going in for surgery.

A long time ago - I don't remember when, they discovered that Harlie also has subaortic stenosis. Note: if you check out the link about subaortic stenosis the picture of the heart is definitely NOT Harlie's. Her's is all crazy. Anyway, it's my understanding that they need to know more about the degree and severity of her stenosis before going in for surgery so they can fix it while he's in there, or not, depending on how bad it is. Doing the Fontan as scheduled without fixing the stenosis if it needs it, would be bad. Very bad. So, no argument from me! Do what you gotta do to give Harlie the best results possible.

So, we will leave Wednesday night (instead of Tuesday night) and on Thursday she will have another heart cath (her 5th) (I think they want to try to get access through her subclavian vein since the doctor couldn't for her most recent heart cath) and they will do a transesophageal echocardiogram or TEE for short. Instead of doing the ultrasound on top of her chest, they will do it by putting the instrument down her esophagus so they can see the heart without the bone, etc. in the way.

Hopefully between these two procedures they will have the information they need to make a decision - and fast. The doctor said that she would see if the surgeon would then be willing to do the surgery on Friday or early next week. I suppose there is a possibility that the information could tell them to wait to do the surgery altogether - but I'm thinking that would be worst case (and I'm not going to think about that).

At first when she called, I was afraid that something happened with scheduling, or the surgeon and my heart was in my chest waiting for her to explain what was going on. But to find out that the surgery is being postponed because of a questionable issue with her heart just makes me sick. I am just going to assume that she isn't sugar-coating it by telling me that the images aren't clear. Regardless, they are going to do more studies to get the answer and we'll know on Thursday.

I guess it buys us another day to pack and get everything together, although now I have no idea if we're coming home on Friday or well, when? Eh, details, schmetails. I live life by the seat of my pants. Plans? Who needs plans? I don't need no stinkin' plans!

Have a good night!
~Christy

Thursday, April 9, 2009

I'm Fine.

Just in case you were worried... I'm fine. Really. Still a bit stressed, but I'm feeling better than last week, so that's good. I've had a couple of nights out with good friends, just getting some good quality time in before we leave. So, that's been wonderful. Sometimes, there's no better cure than good "girl" time. I feel so loved and supported. And lucky.

I kind of feel like Harlie is stressed, too. She's been crying more than usual. I know that might sound odd - she's two after fall. But, really she doesn't cry much. And she's been clingy. And that's really odd. She is certainly not a clingy girl. I can't help but wonder if she feels it, too. And I wonder what she's heard me say. I forget that she can understand me. And I don't really know how much she understands. It is easy to underestimate a child who doesn't "talk." And that makes me wonder what Murphy is feeling. In all likelihood, he's heard me talk about it. In fact, just the other day, out of no where, he said that he misses Harlie when she goes to the hospital. Just rip my heart out will ya? I know we'll have to talk to him. To try to prepare him. Help him understand. But I'm in no hurry to do so.

The nurse practitioner called Wednesday to talk about the details of her surgery. Tell me where to be and when, what to bring, etc. She was very nice. Seemed very sensitive. And she read Harlie's history before calling me. I liked her instantly! There were times during the conversation that I had to hold back the tears. Like when she asked me if her siblings would be visiting her. She said that she knew that I would want to see them, too. It was just weird. To think of her brothers "visiting" her. And me missing them and having to see them in a "visiting" situation, instead of our home. I know this is all temporary. Just temporary discomfort. And that helps.

I have so much more I want to say. But it is late, so I'll have to talk more later. I have pictures and good posts. Really! So, more will be coming this weekend.

Thank you to all who commented, called, e-mailed, etc. regarding my last post. You might not know it, but that makes a difference to me. A big difference. In a good way. So, thank you!

Friday, April 3, 2009

Stress

I think I'm suffering from pre and post traumatic stress disorders.

Ever since her heart cath on Tuesday - when I knew that her surgery date would be April 16th (barring any unforeseen obstacles) I have started to lose my mind.

Looking back on the last two and a half to three years, we've really been through the ringer. And I am pretty proud of the way we've handled things, all things considered. For the most part, I've managed to stay positive and not let things get me too stressed out. But I gotta admit, I'm stressed. REALLY stressed. And mad. Well, not mad at this exact moment. But I was. Most of last week. I was mad. At everything. And at nothing. But, I'll have to talk about that when I'm mad again. It's hard to talk about being mad when you're not currently mad. Well, at least for me it is. And most of the time I try not to show that side of me on here. But I have a feeling that's going to change in the next few weeks...

Anyway, I'll talk about being stressed. Because right about now, that's a given. And I'm guessing I'm going to stay that way for a while. I'm thinking that if I just accept it as a fact, and not try to fight it or hide it, I'll be better off.

Here's what I'm stressed out about (in no particular order):

1. The long days at the hospital. The fluorescent lights. The people. The food. The restrooms. The beeping. The #$!%$#@$! beeping. The same questions over and over. The same answers over and over.

2. The 3am blood draws (yes, she's sleeping soundly, and then BAM - bright lights right in her eyes) the tourniquet, the holding her down and then the sticks. Oh, the sticks!

3. Chest tubes. Everywhere.

4. Not being able to hold her or comfort her. At least for a while anyway.

5. Restless sleep - for her and for me.

6. Missing my family. Missing a "first" of Cooper's. Missing my friends. Missing my life at home.

7. Not knowing how long we'll be there.

8. Tom's birthday (April 28th). Murphy's birthday (May 11th).

9. The sticks. Did I mention the sticks?

10. Not being able to leave her side - comfortably. Not being able to run (although I'm going to try).

I could go on, but I won't.

Her surgery is on April 16th. I'm guessing the average length of stay for this surgery is about 2 weeks. However, based on Harlie's history, I cannot assume that the average would apply to her.

In order to truly understand why I say I'm suffering from pre and post traumatic stress disorder you have to know a little bit of history:

Her 2nd heart surgery was the Glenn, when she was 6 months old. She was in the hospital for 10 days. She was home for 10 days then went into respiratory distress and 911 was called from her pediatrician's office. She stayed in the hospital for an additional 8 WEEKS. That's a grand total of 3 months!

The reason she went into respiratory distress is because she developed a chylothorax due to the surgery. During surgery, her lymphatic vessels (carries the fat from your diet into your blood stream) were damaged, which caused fat to leak into her chest cavity, making it difficult for her lungs to inflate. A drain tube was placed in her chest to allow the fat to drain out and we put her on a no fat diet and waited for the vessels to scar down, heal, and stop leaking. The healing time is different for every patient, and there is no way to predict how long the healing process will take. It could take anywhere from days to months. Really.

It is my understanding that if a chylothorax developed after the Glenn, there is a good chance that it will develop after the Fontan. During the Fontan, more "work" is done in the area of the lymphatics, increasing the chances of damage.

Since they didn't know she had this complication after the Glenn, we got to bring her home. So, she was here in Richmond for the 8 week hospital stay. However, since they leave the drain tube in to watch for a chylothorax, if it does develop, we will be in DC. So, we will have to see how the team there deals with this complication. And see if we can get her transferred here to MCV while she's healing.

I know it must sound as if I'm being negative. But, I am simply preparing for the worst, and hoping for the best. And I'm stressed. Who wouldn't be?

If I had known at the beginning of her last heart surgery what was in store for us, I never would have believed we could do it. It would have been too overwhelming. But with each new day, there was a new opportunity for the healing to happen that day. Every day, we started out the day by looking at how much drained during the night. Hopeful that it was less than the night before. And it really is a true belief - there have been studies - about children suffering from PTSD after having spent a substantial amount of time in an intensive care unit.

She has no idea what's in store for her. I suppose that's a good thing. But it still makes me hurt inside. I know things will be better for her after this surgery. And I know that miracles happen, and perhaps no complications will occur. But, I am still not looking forward the experience.