Saturday, September 19, 2009

the good and the not so good

So! Hmmmm... where to begin?
I think probably the biggest thing that's been really current are the results of Natalie's heart checkup, which is actually her first heart checkup since we've been living in the Denver area since late-April.
I'll back track a little bit to bring it all up to speed. Plus, it helps my brain sort it all out with our days now being more hectic than ever before.
About 3 weeks ago when we had Natalie's pediatric well visit (a visit just to be sure she was handling our move to the higher elevation okay) we started to mentally prepare ourselves for any type of news from Dr. W. This doctor is very cool and really knows her stuff. Before we left her appointment, she began some quick work to get Natalie in to see a pediatric cardiologist at Denver Children's asap so we can get an up-to-date echocardiogram and EKG. With some finagling and criticism from the hospital's appointment setter (she kind of made me feel like crap by repeating over and over again about how I should have had all of this sorted out months ago since we were rushing to get her in... I wanted badly to tell her off and let her know that Hopkins gave us the all clear to not worry about rushing her next heart checkup but it wouldn't have mattered)... but once she called me back to confirm the chest x-ray, bloodwork, and heart visit her tone was so different. So much nicer. She had spoken to our pediatrician and I think she had set the record straight for me (yet another reason why I love the kids' new doctor). We didn't expect to have to rush all of this. We were under the impression we had until the later part of this year.
This past Thursday I took Natalie into one of Denver Children's medical branches at the Lutheran hospital (which by the way is really close by that!) and had her bloodwork completed. They just wanted to check her hematocrit levels to make sure of zero infections and so forth. The chest x-ray was supposed to have been done but they accidentally scheduled that to be done across town at the main campus..which was too far away to get to in time (it's about an hour away).
These people took such good care of Natalie. It's so hard to describe without sounding goofy, but I don't know... they just.. really really enjoy kids (you can tell) and they genuinely seem caring and patient. I don't want to compare any of this to Hopkins, but we can definitely say we were well taken care of. And this wasn't even the main hospital!
After given a juice and a zillion stickers Natalie stopped crying and went to go play in their awesome waiting room (seriously, it's awesome.. no dead fish in a dirty tank like at Hopkins...oh there I go comparing).
The next day, Natalie went back with Ricky (we're in the flu season already so this is the part of the year where we minimize taking James to unnecessary doctor visits with us..this worked like a charm last fall/winter since it helped us to stay so healthy for a long time). This visit was to get all of the other tests completed: chest x-ray, echocardiogram, and EKG and consultation. He really had his work cut out for him- keeping Natalie from running away screaming. She did scream though but was calmed down by the tech. who took her pulsox and was able to achieve a good reading of about 85 (she was in the 70s when screaming). Ricky said the nurse was so sweet and really good with Natalie and got her to stop crying, which no nurse or doctor can ever do when Natalie wants nothing to do with medical tests. This child gets so sad and upset. But, she told me recently she wants to be a doctor, so I thought that was pretty neat. I think one day she'll differentiate between the needle visits to the easy non-needle visits.
The chest x-ray was okay and we're pretty sure the results were okay, too. We did warn them ahead of time of Natalie's "heart shield" which is a thin sheet of gortex blanketing her heart that limits scar tissue from sticking to her breast bone. Since this gortex "shield" is there, it's hard to get a good chest x-ray. But, they got what they needed.
The EKG was fine even though Natalie screamed like a mad woman for part of it. But Ricky got her to calm down so that was cool. The results were fine and they went on their way to complete Natalie's echocardiogram. We were pretty nervous about them having to sedate her for that, but this hospital tries every approach to not do that and they ended up not having to, despite Natalie's frustration and loud screaming. The technician hopped onto the computer and did exactly what she needed to do and very very thorough. Didn't flinch at Natalie's screaming once. lol
After this last test they move onto to meet with Dr.Y, our new heart doctor.
Ricky is too funny. He tells me how smiley and nice she is and how she isn't uptight compared to some of the other doctors we've dealt with. Don't get us wrong..we like the matter-of-fact dry attitude of some doctors..but when it's your little kid there needs to be some personality there. This doctor apparently fit the bill (was so happy to hear that and I really can't wait to meet her).
She explained alot about Natalie's echo. results and compared this with many other factors and how the hospital operates when it comes to CHDs and heart surgery when your little like Natalie.
For a while now, we kind of expected for Natalie to be operated on at any point from the age of 3 to 5..and this is what Hopkins explained to us. Hopkins and some other hospitals have the "later is better" approach.. Denver Children's has the "sooner than later" approach. We knew this before moving here and that was actually a good factor for us because it we felt horrible about Natalie possibly having her Fontan surgery right before or right after starting school. That was just be a crappy situation.
So... with that said, they kind of threw a curve-ball at us: they want to operate ASAP.
I was sitting in my mom's chair crying like an idiot when Ricky told me this. I didn't mean to and I feel so bad I did because Natalie was right there.
So yeah.. they want to operate because of 2 major factors: Natalie is a big girl (in the 90+ percentile for height and weight) and is at 14.8 kilos.. they operate at around 15 kilos.
Natalie's Glenn Shunt (half of the Fontan) can work for only so long by itself for someone growing so rapidly. They need to complete her Fontan to re-route blood flow to her inferior vena cava to her pulmonary artery. Here is a good description that I found online:

"The basic principle of the Fontan operation is that it is not necessary to have a ventricle to pump to the lungs as long as the lung arteries have a low resistance, are well developed and are of a good size, and as long as the single ventricle fills at a low pressure. The surgery involves a direct connection of the blue blood returning to the heart into the pulmonary arteries. This can be achieved in a number of different ways, sometimes with and sometimes without the use of synthetic tubes (conduits). Many centers prefer to place a small hole (fenestration), which prevents a buildup of excessive pressure within the veins of the body when the resistance in the lungs is high. This will result in a certain degree of cyanosis (blueness). After the child has adapted to the Fontan circulation, it may be possible to close the fenestration in the catheterization laboratory with a device delivered by catheter."

So basically, this operation will allow more blood flow to her lungs and whole body...and let her grow like a weed. As of right now though, we don't know which approach they're going to take..whether they're going to use conduits or a "baffle" is a picture of the internal "baffle"/wall:

One major difference with this surgery is that they put her on the heart/lung bypass machine for a shorter period of time.
We'll find out so many more details in the weeks to come. There was only so much the doctor could speak about with Ricky and with Natalie sitting right there. They'll be talking with us again soon and figure out which proper route to take with her surgery.
The biggest factor will be her catheterization results.. ..this will be a huge importance so the doctors can figure out exactly what it going on inside her heart and what her pressures are. The good news is that we can have this done anytime before the surgery. As long as we have it completed soon(ish) and we're looking at November for this (they're letting us pick when). The open heart surgery was requested to be done around the holidays (THAT was what made me upset at first) but they are comfortable with waiting until January (I love them so much for that). So we're thinking mid-January. The cath. will be a possible overnight visit since they may or may not need (probably won't need) to perform additional catheterization procedures. Honestly, as I type this my eyes are getting blurry and tired so I'll have to post more about that as we find out more. They probably won't have to do anything with the cath. other than just check her heart in detail to prepare for surgery, but in the event that we hear otherwise we'll update about that. The thing is, Natalie lives in a higher altitude than before, so sometimes CHD kids in areas like that can develop abnormal blood vessels in their hearts. But so far, so good. The heart catheterization will tell us everything we need to know. Plus, we'll be talking more with Natalie's heart doctor during this next week.

I would be lying if I said we weren't freaking out. But we're her parents and that's our job. We're hiding our fear and replacing it with genuine positivity.. because this surgery is going to prolong her life..a fulfilling life.
I would be lying if I said we weren't surprised to hear that they want to operate so soon. I kept thinking "she'll be 3.. 3 is the number". But I was wrong. And that scared me.

But the good thing is it'll be done before she begins preschool next year, but it's not so good because I was hoping for more time for her.. more time where she didn't have to feel pain and keep being Natalie.
But this is a good thing. A great thing. And we're in wonderful and caring hands.
Natalie is going to live a long and happy life because of this surgery. It's scary to go through but the results are beyond comparison.

Next stop- visiting the main campus so we can see for ourselves if it does, in fact, look like a mall inside (that's the rumor). Pictures to come.


Sean said...

Me and Donna promise to be there, to comfort you all and also to be there to pray for her. With so much love around, plenty of family for support, and with what is excellent care, expect nothing less than the best outcome possible. Natalie is my niece, and I fully anticipate seeing her grow up healthy in all categories. "Fear not." "With God, all things are possible" We all love you and your wonderful family!

wildwesthome said...

I've kinda been blog-stalking you for about a year now...I think we might even know some of the same people? I know I found you through another blog, I just don't remember which one... At any rate, I'm not a weirdo, just a mom with my own CHD girl and thought I'd share a little bit about our Fontan journey.

My girl had her bi-direction Glenn at 18-months in an emergency she-might-not-make-it situation which is the worst way to have surgery.

She had her Fenestrated Fontan at age 8 (3 days after her birthday) and every.single.person. kept double-checking her age with us because it was SO unusual. She'd managed to stay in the high 80's with her oxygen sats and was doing very well so docs were comfortable with waiting. We ended up moving to Colorado (Denver area as well) 2 months after her surgery and also had a cath for her while there at Childrens to try and close her Fenestration (unsuccessful).

The hospital is wonderful and I loved being able to leave the other two in a special "sibling child-care" area for all of her appointments. Overall, we a great experience there and I always felt she was in very good hands!

My girl has some unusual physiology which resulted in needing to get back to lower altitude asap so we were only in the Denver area for 5 months - thus my experience there is limited.

I'd be happy to chat if you have any questions or concerns. I never was able to find a support group or other "heart" moms when my girlie was younger and I often wished for insight from other parents. The internet has just been amazing in it's ability to bring people of like minds closer! However, if I'm overstepping just say so :).

Natalie is precious and everyone I met at Children's seemed to truely love children and their job. I know you want the best and a future for her; how wonderful that she's in the caring hands of others who want the same!