Fontan questions....

[Chrissie]

Hi everyone, I know we have a little bit before Kylie's fontan, but I just have a couple of questions and we don't go back to cardiology until late August. So here goes.

1. What determines when they are ready for the fontan?
2. Has anyone had to be on oxygen before the fontan?
3. Has anyone had to have a heart cath before the fontan?
4. Do their little bodies get sicker before the fontan?


Well that sums it up. Kylie's sats have just been getting lower. She used to be in the low 90's and now she is about 85-87 I know that is still good. I just worrry because Dr P. said that some times where they stiched up the shunt hole, it can narrow causing problems. He said that is the only thing we have to worry about. So just wondering.

Also does every heart baby have a rough time eating? Kylie does not want to touch solid food unless its pizza or graham crackers.

Little update. Kylie is doing so well. Dr P. said we will just do therapy on her heart as she grows with the Enalapril and Dig. She just started crawling a few days ago and loves it, I can tell it is a lot of work for her, but she knows when to stop. She is just a busy little 10 month old and if you didn't know about her little zipper. You would have no idea she was so sick. Thanks for any answers to my many questions.:o

[Jill Callister]

Ayden was scheduled for the fontan 2 years ago (age 2) because he was showing a small decline in his oxygen. They did do a cath and an MRI. However, his surgery ended up being canceled the day before after reviewing his case again. Last year I brought him in because I could tell he was getting worse. He was struggling going up and down the stairs and just seemed to wear out much easier. At his appt. everything looked good until we checked his sats before and after climbing 3 flights of stairs. The poor guys oxygen was in the 50's. We had him scheduled and this time we had to cancel due to illness. We rescheduled and they canceled and decided to do an AV Fistula to buy him time since he was extremely high risk for the fontan but needed something quickly. Other than being extremely high risk for the fontan he has done great, he eats well, and is very active.

[busyhoneybee]

The biggest thing to remember is that every child is different.

That being said, here is our experience. I think overall heart function, sats etc. play into the decision about when to surgery. Remember that it is not just one Dr. choice, it is discussed with all the cardiologists.

Elaine was not on O2 before her fontan. She had abnormally high sats for a heart kids due to all of her collateral veins. It was deceiving because her sats would be fine even when her body was not. Obviously each kid varies.

I think it is routine to have a cath and echo's before surgery so the docs have the most knowledge about what is going on inside your child. Sometimes it is too risky if your child is so sick, but I think that is the general procedure they follow.

Generally speaking they wait as long is safe to perform the surgery since it helps for them to be bigger. Obviously it is a delicate balance as they don't want your child to be too sick, but they don't want to perform surgery when it is not yet necessary. I would say yes, she will get some sicker before her surgery.

Elaine always struggled with eating, and I know it is a common problem with these heart kids. I think it just takes so much work and their little bodies are already working overtime. try to sneak in extra calories where you can. Elaine like pediasure and we would try to add butter and mayo to things. Obviously if they are picky, you are just happy when they eat. Elaine loved dairy = constipation. So watch out for those things.

You are doing a great job with your beauty. She is doing well because you know her and what she needs. Follow your instincts and if you have questions, you know to ask. I hope this helps you in some way!! Good luck!

[gayle.pete]

Peter hasn't had his fontan yet but we were planning on doing it this year during the summer (he is 2) however even though his oxygen is in the upper 70s low 80s on room air Dr. Su said that he wants to wait a year. About her oxygen dropping, Peters went from being in the 90s after his glen at 6 months to about a year later being where he is right now. Because he isn't changing they are willing to wait if it starts to drop to the lower 70s all the time that is when we would move the surgery up. Dr. Su told us that they do normally do a cath before the fontan but because there were some issues with peter and his cath last time he was saying that we might be able to get away with an MRI. Here's hoping for that one. Anyway not sure if this helped or not since Peter hasn't been there yet but maybe it helps to know someone else who is preparing for it. By the way Peter has Tricuspid Atresia HRHS.

Gayle Dowdle

[Heart Mommy]

We are also waiting for the Fontan. Gator has HLHS. I love this "honey moon" we have been playing hard. From what I understand, the docs look at each case. Gator has spent a great deal of time in the hospital, so the longer we can go before the Fontan the better. He is two and we haven't even started talking about it. But, they would like to see him weigh at least 15 kilos before we start the rest of the testing. He has always been a somewhat good eater. I am super lucky. I just try so many things all the time that he has learned to like it or loose. I want him to gain weight, but I don't want to feel like a 24 hour short order cook. So I make sure I schedule tons of snacks. (have you seen me? I have no problems with food myself)

I make his mac and cheese with whipping cream and extra butter, or butter flavored crisco...

When I make him a PB&J, his gets butter on the bread too.

He loves milk shakes in the morning and I give his a little extra boost with a protein mix in.

He loves Ranch on everything.. And I try to add butter to as much of his meal as possible...

So gross. But it's working.

Good luck...

[wendytalbert]

I have two children who have had the fontan done.

Joseph didn't have his until he was 7 years old because he wasn't strong enough to endure the surgery when he was younger, however, at the same time his sats had always been in the low 80's and had never gotten worse so it hadn't become a necessity. When he was 7 he did have his sats drop enough that he did have to have oxygen while he waited for the surgery (about 6 weeks).

Nathaniel was 3 and a half when I started noticing his lips and fingers turning blue more often. His appointment wasn't for 2 months but his brother had an appointment sooner than that and we checked Nathaniel's sats at Joseph's appointment and were able to move quickly towards surgery. This helped Nathaniel not need to have oxygen before his surgery.

A heart cath is always done before a fontan (or any open heart surgery) for two reasons. First, if there is something that can be repaired through the cath it is less invasive and can sometimes allow the child to wait longer before the surgery. Doing the minor repairs through a cath can also make the later surgery more successful. Second, the cath gives the surgeon a lot of knowledge about what is happening inside the heart and helps them prepare for the surgery. Joseph actually had his surgery postponed two weeks in order to do a second cath because Dr. Hawkins didn't feel like he had enough information to go ahead with the surgery.

For each child it is different but the doctors are mostly trying to balance waiting for the child to grow strong enough for the surgery to be successful and getting the surgery done before the child becomes too sick to survive the surgery.

As for eating, Joseph had a hard time with the whole eating thing but we just kept working at it and about the time he was 1 he had mostly overcome those issues.

Hope some of this helps!
Wendy

[Brooke]

Hey Christie,
This is Brooke Fescemeyer from the IHH picinic in June. I think I remember meeting you and Kylie at the picnic. I don't know the answer to most of your questions, but in regards to her feeding challenges, my mom has told me that I had some funny behaviors around feeding when I was little. She said that sometimes I would put a cherrio in my mouth and not seem to know what to do with it. Growing up, I gagged easily, especially on mushy foods like bananas. I think I also had a tendency to overstuff my mouth, which might have contributed to the gagging. Today those symptoms have basically disappeared but I still avoid banannas :). I actually took a class on feeding and swallowing as part of my master's degree in speech therapy and asked my teacher about some of the things my mom noticed in me growing up. My teacher said that sometimes kids who have had breathing tubes (like for surgery) can be protective of their mouths. Even when they're not conscious when the tube's put in, their unconcious nervous system still "remembers" the experience. This might have something to do with what you're seeing in Kylie.
Anyway, I would say if you have any concerns that she's not getting the nutrition she needs, consult a feeding therapist (a.k.a. speech-language pathologist). Hope this helps.