Wednesday, September 23, 2009

just to clear a few things up..

The last post I wrote about Natalie's heart health and soon-to-be operation may have confused some people. I'm sorry for that especially since I should have written it when I was more well-rested and not so sleepy.
Also, Rick and I hear alot of medical terms often from our doctors that we're used to. And you all aren't as used to it. So, just to clear a few things up..

*Natalie's heart checkup was fine. They didn't find anything unusual or unexpected. Think of this way- if we had that checkup at Hopkins they'd be delaying her surgery longer. We love Hopkins, but that's their approach to Natalie's condition.
Denver Children's is using her weight as a primary guide. They use the "sooner than later" approach and want Natalie to have her Fontan completed before it's too late and she's heavier. Remember, Natalie is a big girl. And she'll be close to the age of 3, which is a common age to have a completed Fontan.

"Seriously, what is a Fontan?"
We know it's confusing (trust me).
Alot of the technical terms and fancy wording leads to one thing: they are going to work on her lower extremities because her "Glenn" (half of the Fontan) worked on her upper extremities. As of now, we don't know which approach they're going to take (there a few choices) until the pediatric cardiologists figure out the best course of action. Very similar to Hopkins- they will have their round table discussion and choose what's best for Natalie. They will keep us in the loop throughout. Each type of CHD and how well the child is doing determines that also. And in Natalie's case, she's still coping very very well.

"But does this mean Natalie will actually have to have open heart surgery?"
Yes, because for her condition, this is the only way to do it. Some Congenital Heart Defects can allow a catheterization procedure to partially fix the problem, but Natalie's is too severe.

"And yeah, what's up with the catheterization talk?"
Natalie will have to go to the main campus to be put to sleep, monitored, a small catheter is inserted near her groin where dye is gently pushed through.. this will be used to take clear photos and check all of her heart chamber pressures. This is necessary before open heart surgery so they know exactly what they're dealing with before the real invasive surgery begins. The dye is harmless and the procedure takes about an hour or two. Remember, this is the same exact procedure that was completed a few weeks before Natalie's first open heart surgery when she was 5 months old. So, this will be her second cath.

UPDATE: Natalie's heart cath. is scheduled for Thursday, October 8th and 10am (check in time) and at noon for the actual procedure. We'll find out the results that day and then follow up with her cardiologist soon after. Just wanted to keep that updated..

"You said something about abnormal blood vessels..does Natalie have that too?"
We don't know but like we believe and what Natalie's cardiologist believes, is that she doesn't. The catheterization will show those tiny blood vessels that we can't see through other tests, so we won't know anything about that until after her cath. The thing is, living in higher elevation like Denver, puts a little more extra strain on CHD childrens hearts. But, for many kids like Natalie, they never have any additional problems. So, for now, this is nothing to worry about. The doctor just wanted us to be aware of small possibilities since we're from Maryland.

"What if Natalie does have some enlarged or swollen heart blood vessels? What then?"
We'll take one thing at a time. If they find anything like that, they will keep Natalie for extra time at the hospital, and fix the problem. They can use tiny little devices called stents and coils to insert into those veins through a catheterization and help bring them back to a normal state. But for now, we aren't too worried about that just yet.

"Do you think Natalie will be able to keep living in a higher elevation like Denver?"
Probably.. but for now, we have to see what the doctors say. Before our big move, Hopkins felt very comfortable with her moving here and saw no reason to hold her back. Some kids do have to live in lower elevations. So far, Natalie is just fine and has coped very well. We just won't be able to take her higher than 7000 feet (we're about 6000 feet) as, yes, that will be too much for her. So, no Estes Park or ski trips for a long long time (that suits us just fine since we can't ski anyway). But again, for now, Natalie is able to handle Denver very very well.

"But what if the doctors say you have to move to a lower elevation? What then?"
Then, we'll do what the doctors tell us. Natalie's good health is our primary concern. We love Denver, but we love Natalie more.

"How long will Natalie be in the hospital for her next open heart surgery?"
The surgery itself takes a few hours. For recovery, it's very similar to her first time. It could take 5 days to a few weeks or more. We're hopeful it'll take the least amount of time, but we don't want her to leave the hospital too early. Just like last time, things like chest drainage tubes, take time to come out. They want to be sure there is no fluid building around her heart and lungs.

"But it'll be flu season aren't you scared that she'll be in the hospital then?"
Not really, because it'll be germier here at home than there at the hospital. lol

"Will James continue school while she's recovering?"
That is a tough one. *sigh*
We want him to. We also want to keep things as normal as possible for both kids, but as of right now, we need to speak to his teacher and figure out what to do. Natalie won't be able to be exposed to lots of germs because at that time (early recovery) it is crucial to avoid any infections. Those infections can easily spread to her heart when she's in such a fragile state.

"Why didn't the pediatric cardiologist give you more information at her appointment. Seems like it was rushed."
Number one thing to remember, Natalie is 2 1/2 and listens and internalizes everything we talk about now. The doctor didn't want her to feel uncomfortable. So, we'll be keeping in touch with her doctor over the phone and even plan a consult with her (so it'll be her, Rick, and I, no kids). These doctors are very good at what they do and they will work with us.

Just the big thing to remember everyone, Natalie is headed for some serious surgery, but we need prayers and constant positive vibes. This surgery is to prolong her life and nowadays, CHD adults are living pretty normal lives and well into their 30s and 40s. Many of these people have children. We're very lucky to live in the times we do and not 40 or so years ago when not much was done for these children with a heart defect.

We're in shock (still) that her surgery is only a few months away, but by the time she attends kindergarten, or even pre-k, she'll be healed and well. It's the years ahead that will be tough because that's when she's going to learn more about her heart, and the lifestyle she'll have to lead to remain healthy. She'll always have to modify her lifestyle (no contact sports, eat healthy, exercise, etc.) It's those later years, we think, that may be even tougher.
But for now, we take it one day at a time.

5 comments:

Michele said...

You and Natalie and James and Rick will be in our thoughts and prays. I hope all goes well. Miss you lots.

Carey said...

This was a great post! Thanks for explaining everything better. Good luck with everything - especially figuring out how to keep thimgs somewhat normal for James. I know that has to be tough on top of everything with Natalie. You will all continue to be in my prayers.

Kristin said...

Wow. We're thinking about you all over here!

Dawn B said...

Michele- we miss you too!! one of these days soon we'll have to venture back over to the East coast and meet your beautiful kids.
Carey- same goes for you! I can't wait for the day we can meet Bianca.
Thanks for all of your kind words, and I'm so happy that this post helped to understand the situation better. It helps me sort to sort it out mentally in return, so it's a win win. lol
Krisin- thank you;)
We don't know what we'd do without such wonderful support. It makes our hope grow even stronger. We are holding strong and envisioning such a bright future for Natalie. Thanks so much xoxo

Anonymous said...

Thanks for the Q&A. I was a bit confused. I think its great that Natalie's Doctors feel she's ready for the surgery. What isn't great is-she has to have the surgery, and the worry & waiting you & Ricky (and James), have to go through. She is a tough little girl, look at how much she's been through already, and continues to get stronger. About post-op infections, whenever a Doctor or nurse, (and especially nursing students), tend to Natalie, insist they wash their hands first. There's usually a sink in each room. When I was hospitalized, I couldn't believe how many "professionals" went from patient-to-patient without washing their hands in between. I finally spoke up, explained my concern of someone sticking a thermometer in my mouth, (or giving me medication), after they tended to another patient. You are very diplomatic, I'm sure you'll get the point across in a nice but firm manner. Google "Post-OP infections", the stats are a real eye opener. I know its such a cliche, but as a parent, you're going to worry, however, she's getting excellent care. PP