MRI Is Scheduled

Had a quick moment to post some pics.

Scarlett has a cardiologist appointment this Thursday, but the MRI is scheduled for August 16. Have to run, but will post more later.

Not Out Of The Woods

Well, the echocardiogram results came back normal and she was released on Wednesday afternoon. But that doesn't mean she's out of the woods yet.

Beth (Sacrlett's other cardiologist) said the echo looked good but that the leak was still there. Because the leak is still there, the pressure on her right ventrivle (RV) is still there. Mind you, the overall heart function is better and the tightness in her left pulmonary artery (LPA) is not as bad, but it is not completely gone.

So the question now is HOW MUCH PRESSURE? And HOW MUCH LEAKING? In order to quantify "how much" and "how fast"? Beth wants to see her back on Tuesday for a follow-up appointment. They'll check her weight, listen to her heart and just assess her. Then in a month, they want to do an MRI to determine exactly how much blood is regurgitating back to the RV.

An MRI will give Dr. Cleveland the answers he needs to determine how much Scarlett's heart will be able to handle. But since the leak and the pressure are still there, then it is inevitable that her next open heart surgery to replace the homograft will be soner than the 2-4 years an originally estimated. : ( The MRI will give us a lot of answers.

Echocardiogram

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. :)

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.

Meaning: 
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.

Leaky Valve : (

Well, the cardiologist appointment last week had good news and bad news. But for me, it was more like bad news and more bad news. The “good” news is that she gained weight. She now weighs 17 pounds 2 ounces. According to the cardiologist office, she gained 1 lb 3oz since her last visit. She is still in the zero percentile for growth, so I was still disappointed. The cardiologist said she was pleased with her weight gain, because at least she is gaining.

She tried to make me feel better by saying Scarlett went from the negative 5th percentile to the negative 3rd percentile. I just wish she was on the growth chart again. I was not happy about her weight gain, because when I took her for her 1 year check up, she weighed 17 pounds. So, to me she only gained 2 ounces in 2 months. But maybe I’m mistaken. : (

The other bad news is that her echocardiogram showed she has a leaky valve. The homograft, (pulmonary valve from a cadaver that they implanted in October) is showing some regurgitation backward into the right ventricle. Thereby making her right ventricle work overtime to try to pump that blood back up the homograft.

Because this excess (leaky) blood makes the right ventricle work harder than normal, over time it adds extra pressure on the right ventricle, reducing its ability to pump blood (a condition called right-sided heart failure). Mind you, this is over time. But what we don't now is HOW MUCH TIME. Are we talking weeks? or are we talking months?  I was thinking since her surgery was in October, that I had at least 2-4 years before I heard the words 'leaky valve'. So, yes, I was a little surprised to hear those words this soon after surgery, it's only been 6 months.

I know leaky valves are normal and expected for someone with her heart condition, but it really threw me for a loop. : (  I'm not ready to send her back to the hospital yet.  Dr. Pophal said that he may be able to treat the leaky valve with medicine...but in the end, he did an EKG (in addition to the echocardiogram), and they want to see her back in another month for another echo.
I tried to act calm and cool about it when they told me. I asked if this was a new finding, or if it was leaky at her last echo. Unfortunately, they couldn’t find her last echocardiogram to compare it to, so I was secretly FREAKING OUT inside.

I'm not gonna lie. I'm very worried about it. I know I probably shouldn't be, but when you live with a child that skirts the fine line between life and death, it is very hard not to be worried. The fact that I'm a complete worry wart doesn't help the situation either. Today Scarlett wouldn't eat and she was unordinarily sleepy. I immediately got worried that it's her heart. It could be nothing, but now that I know she has a leaky valve, it's on my mind that any unusual behavior can be heart related.

I will feel better after our next cardiologist appointment. For now, Scarlett is still doing well. She's acting "normal", and she seems happy. Her appetite has decreased, but maybe it's just because she's teething. I still need to buy a new digital camera, and when I do, I'll post more current pics. Thanks for reading.

Growing Up

I can hardly believe that my little baby is already going to be 15 months old. She is doing so awesome. She's practically running now. She is drinking from a sippy cup, wearing size 9-months clothes, eating big people food, dancing when she hears music, and trying desperately to talk.

It's been almost two months since her last cardiologist visit. She is going for a routine echocardiogram and clinic appointment tomorrow. This will be our first 'official' visit with Dr. Pophal. Beth will be there too, but it will probably be the last time she sees Beth, because she has officially transitioned from the "high risk" category to "normal" category, and only needs to be monitored every 2 months. Maybe at tomorrow's visit they'll say that she can go longer in between visits?? Like 3 or 4 months?  She seems to be doing so fantastic. Such a blessing.

I broke my camera somehow on Easter Sunday. These are some of the last pictures I took. As soon as funds are available, I'll buy a new one, so that I can start snapping  and posting new pics of my little princess.

Other exciting news to date: We moved!! If you've been reading my posts since July of last year, you'll know that I was house hunting for 8 months. I finally found our dream home in Glendale, AZ very close to Cardinal Stadium also known as Westgate.  We moved in April 5th and I love it! The neighborhood is pristine and beautiful. Very family friendly. Beautifully landscaped and maintained front yards, nearby parks, and best of all, Scarlett's aunt and cousins are within walking distance (6 houses down the sidewalk!).  I will post more pictures later this week, and definitely more when I get a new camera.