This is a blog for my daughter Scarlett. She was born with a complex congenital heart defect known as Tetralogy of Fallot with Pulmonary Atresia. She is my little hero.

Wednesday, June 30, 2010


Day 2 at St. Joseph's Hospital. Scarlett had a pretty restful night. She woke up a few times crying, but settled back down within minutes. Much better than I expected. This morning she woke up in such good spirits. She is such a tough little girl. She was standing up, playing with toys and wanting to he held by mommy and daddy (which we were obviously happy to oblige).

They removed her IV last night/this morning around 2:30am. Her chest x-ray at 5am came back normal, so we're just waiting on the echo results (which is being done at this very moment). If the echo yields good results, then we'll be able to go home today! yay!

She hasn't thrown up at all from the anesthesia, and as a matter of fact she had a ravenous appetite when she got up to her room. She drank 8 ounces of Pedialyte! (she usually only drinks 3-5 ounces at a time).  Then last night she drank her milk bottles like a champ and seemed much hungrier than usual. Probably because she had nothing to eat or drink from 2:30am Tuesday morning until 3:30pm Tuesday afternoon.

After her echo, we're gonna let her have a little breakfast. I ordered her some scrambled eggs and toast. The nurse just brought in a high chair for her. We're just waiting  for the ultrasound tech to finish up the echo. And believe it or not, she's not screaming right now (shocking!). She usually *hates* echo's. and fusses and fusses and cries through the entire thing. But right now, she's being a little saint. Good girl Scarlett! Ooooo, the echo guy just finished... anxious to know the results.

Well, I don't have internet access at home, but I will try my best to figure out a way to update the blog, maybe via my cellphone or perhaps going to a friends house to use their internet. :)

Tuesday, June 29, 2010

Successful Heart Cath

Little Scarlett is resting peacefully after a very busy day! We had to check into the hospital at 9:00am this morning for her 11:00am heart cath. I packed our bags last night and finished packing this morning. We actually got a late start but ended up being perfectly on-time. We did the usual...registration, walk up to Peds pre-op, hang out there, get weighed and measured, fill out more paperwork, sign consent forms, change into her tiger hospital gown, get blood drawn, etc.  Then it was off to the cath lab.

Daddy got to push Scarlett in this toy car that the hospital has (this pic was taken before she changed into her tiger gown).

We got to meet with Dr. Pophal (like I mentioned in my last post) right before handing her off to the nurse, and he let us know what he was going to do in the cath lab. Balloon angioplasty of her left pulmonary artery (LPA) and stent it if he had to (which he didn't want to).  He had mentioned that her homograft was leaking moderately (as opposed to mild or severe).  He said that he was hoping that the leaking was because of a narrowed LPA, and that if it wasn't then we might have to consider that it's just time for a new homograft [which is a major 7-10 hour open-heart surgery]. We were hoping and praying for good results, needless to say.

We handed Scarlett off to the nurse around 11:20am. She started screaming her head off when I handed her to the cath nurse. It broke my heart. The nurse said that one of us could go in there with her while they administer anesthesia and she falls asleep. I volunteered Todd.  and I'm glad I did. He came back very teary eyed because he said Scarlett went out fighting, but that she was out within a minute of struggling.

Then we headed up to the 7th floor PCTICU, to wait the 3 to 4 hours during her heart cath. Scarlett's auntie Dawn came to wait with us, and uncle Marc also came for a while too. Finally around 3:15pm we got the call that they were done and they were bringing her up to her room [where we were waiting]. We had to leave her room so they could get her settled in when she arrived. We went to the waiting room for about 10-15 minutes.

Finally we were able to see Scarlett. She was groggy and resting, because the nurse said she had woken up and became upset, so they gave her something to calm her down. So, when we walked in she was quasi-sedated. But that didn't last very long. because she woke up (again) and oh my golly! what a harrowing experience it was. She was super duper upset! Turning over, crying, fussing, kicking etc..

I kept asking: is she in pain?, is she hungry?, is she scared?, she was just so increibly upset and irritated.

Mind you, she's not supposed to move her leg for 6 hours [heart cath means they inserted a catheter into the artery in her groin/leg area], but she was kicking/screaming/crying/writhing and throwing a fit for the better part of 45 minutes. She would relax and settle down, but that would only last a minute or two before the crying and fussiness started again. They upped her pain meds, that didn't work... then they gave her some Morphine, and that helped for 10 minutes but after that she was right back to being very, very upset.  Finally a new nurse came in and gave her some more Morphine and she calmed down and has been sleeping ever since. 

So now onto Dr. Pophal's  cath report....

Dr. P said that he was able to balloon angioplasty Scarlett's LPA, and that should help with regurgitating bloodflow. Because remember, her right ventricle (RV) pumps blood up the homograft, to the pulmonary arteries to the lungs. But because her LPA is so narrow, the blood can't pass so it regurgitates it back down the homograft (called "leaking"), and over time this leads to right-sided heart failure because her RV is working overtime to try to pump twice the amount of blood through the homograft.

Now that her LPA is widened [post-cath], he is going to give her RV a chance to release some of the pressure that is building up from working overtime these past few months. HOW MUCH TIME? we don't know. He is going to discuss Scarlett's case with Dr. Cleveland (the surgeon). Depending on what Dr. Cleveland says, well.... we might have to replace the homograft sooner than the 2-4 years that I originally thought in October.

1.) Blood is supposed to flow in a forward direction in your heart (with no backward "leakage")
2.) Because Scarlett's LPA is narrow, blood was regurgitating ["leaking"] back to her RV
3.) The leaking in her homograft is moderate or moderate-to-severe. This is bad.
4.) The leaking [backward bloodflow/regurgitation] is causing her RV to work overtime to pump it back to where it belongs
5.) Because her RV is working harder than it has to, it's causing pressure in her RV.
6.) The pressure in her RV is mild-to-moderate.

After today's heart catheterization, I am hoping and praying that the ballooned LPA will allow blood to flow through the homograft (one-way) and lessen the pressure in her RV. Because, if the pressure in her RV maintains or gets worse, she will need a new homograft [which I mentioned earlier is a 7 to 10 hour open-heart surgery!].  Unfortunately, I don't know how much time Dr. Cleveland is going to want to give Scarlett to allow her RV pressure to come down. 2 months? 4 months? 6 months?

The good news is that we did buy her some more time. Because if Dr. Pophal wasn't able to balloon angioplasty, then it would have meant immediate homograft replacement. So, at the very least, we have bought her some more time [how much time, I don't know yet]. Oh, and I almost forgot...most importantly, she is not on any supplemental oxygen after this heart cath! Woo Hoo! :)

Thanks for everyone's thoughts, well wishes and prayers today. I will post more when I know more.

Heart Cath

As I'm writing this Scarlett is in the 'cath lab'. Just as I expected, it was extremely difficult to hand her over to the nurse. She started bawling immediately, so Todd had to go into the cath room with her to hold her while they 'put her under'.  Talk about a grown-man crying...

I meant to blog several times since my last post, but I don't have internet access at home anymore, so it's been tough.  Since my last post, I had a quasi-nervous breakdown because of Scarlett's leaky valve.  The second I heard Dr. Pophal utter the words I was immediately panic stricken.  WHAT? NO!, Not yet!

I know that the words "leaky heart valve" means that she's that much closer to her next open heart surgery...and at the time (May 13) it had only been 7 months since her last major open heart surgery. I was anticipating that her homograft would last her at least 2 to 4 years as they had originally hoped.

But, Dr. Pophal was pretty calm about it when he told me. He said that she wasn't in immediate danger, and that if the leak got the same or worse at her next echocardiogram (a month later), he would just schedule her for the cath lab where he could balloon open her pulmonary arteries.

So, I was prepared at her next cardiologist visit that it was a very real possibility that she could be going in for a cardiac catheterization this summer. As expected, at the next visit (June 10), Dr. Pophal said that the leak was the same. so they scheduled her cath for today June 29.

Dr. P said that he planned to go in and stretch her pulmonary arteries so that the blood that is going in there and regurgitating back to her right ventricle will stop regurgitating. But this morning, he said that IF he's not able to stretch (balloon) her arteries, or IF that isn't the reason why the regurgitating is happening [which is a possibility], then it means that it's possibly time to replace the homograft. Which is a fear of mine. I hope and pray that this isn't the case, but I will blog more after she comes out of the cath lab.