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[cherylchapa]

Not sure if anyone will remember but my son Christopher had his pulmonary valve replaced with a bovine tissue valve in the summer of 2009 due to tetralogy of fallot.

Well, the other day we went to the cardio for a check up and found out we are most likely headed for an early replacement this summer or sooner. He has developed asthma, a significant leak in the valve and an obstruction. Since Chris is operating at 60% lung capacity and doesn't even notice he's winded, he will be using singulair and an inhaler for a few weeks prior to a cath in a few weeks. At that point, if the cath confirms what was seen on the echo, we will schedule for a replacement. Until then, he is on limited activity which includes no baseball. :thumbd:

Needless to say, we are devastated! Chris had finally begun to enjoy life. He was working on his second season of Little League and finally figured out how to connect bat to ball and get on base. He's even hit of couple of line-drive doubles! Cardiologist says he can hit and catch and throw but no running the bases. Well as I understand it little league doesn't allow running subs.

Anyway, anybody else have to have their valve replaced so soon? Any kids? Chris is 12 now.

Thanks!
Cheryl

 

[kfay]

Cheryl, I'm sorry to hear that Chris' valve is leaking badly enough to already need a replacement. Do they have any idea what the obstruction is? The thing you need to keep in mind is that they have gotten very good at re-ops on kids, assuming you are going to a very experienced center (I can't remember who his surgeon was last go round, and I'm assuming you are using the same?). Hopefully, this next pulmonary valve will at least last him well until adulthood. Please keep us posted.

Kim

 

[Jkm7]

Very sorry to read this, Cheryl.
This has to be a very difficult time for your family.
Sending you all best wishes.

 

[Duffey]

I'm sorry to read this news, Cheryl. I can't imagine how disappointed you, Christopher, and your family are. Others who have been in a similar spot will be by at some point to share their experience.

 

[Debbrn]

So sorry to hear that your son will be surgery again. I am also a TOF patient. I also have 60% lung volumes from scoliosis and all my previous surgeries. I was slowly able to increase my volumes over a few years. I had my pulmonary valve replaced with a bovine valve last may. They also thought I had asthma, I think they were wrong. What symptoms do your son have that they think that he has asthma? Do his pulmonary function tests get better after albuterol?

 

[Lynlw]

Cheryl, I know EXACTLY how you feel. This kind of thing has happened to Justin a few times. Its heart breaking and you feel like somone kicked you hard in the stomach. What I write next is just my thoughts form our experience and may not help, but might be something to consider. Or at least give you a little hope.

He has a conduit too correct? If so Do they know WHERE the obstruction seems to be? Hopefully it is in a spot they can open with a balloon or stents in the cath lab to buy time -so hopefully they can put off replacing the valve until he is pretty close to full grown. As far as I know if they can open the obstruction, since it is a pulmonary valve, the leaking probably isn't as bad since many of the CHD kids, especially the older ones/adults don't have a pulmonary valve or didn't get one until they were adults.since it is the one valve you don't really need. So leaking wouldn't be a problem like a stenosed valve, since the blood still is getting to his lungs.

I would definately get 2nd opinions on what to do from a few CHD centers, you can just call and ask what to do, what do they need..copies of reports and usually CDs/DVDs of the actual cath, echo MRIs etc is usually want they want to give opinions from records so they can watch the tests themselves and not just go by the reports someone else wrote.
Maybe they IF the valve needs replaced they can use the Melody (cath) valve. Do you know what size valve and/or conduit he has now?

Justin did not have a pulmonary valve until he was 17, because his origonal surgeron Dr.Norwood, left it out when he made the right ventricle/pulmonary conduit during Justin's Rastelli (kind of like a TOF repair even tho he has Transposition of great vessels, since he wasn't a candidate for the switch) when he was 18 months old (in 89). Hoping to cut down on the number of surgeries Justin would need until he reached his full size.

He also built Justin conduit mainly out of his own tissue in theory/ hopes it would grow with him. It worked pretty well, since he made it to 10 before it was stenosised and obstructed. They had to cut out and patch a section of his conduit with more of his own tissue (this was in 98). Two years later it was blocked badly again (his gradient was in the high 80s) this time since the stent they needed was approved, they were able to open the conduit in the cath lab with 2 stents. They ballooned the stents open a few more times until they couldn't open them more so he had to have the conduit replaced, but he was 17 then so it bought 5 years and they could use a much larger valve and conduit since he had grown quite a bit.

So when he was 17 (2005) they replaced the entire right ventricular outflow tract, they (Spray at CHOP) didn't want to put the valve right under his sternum since it was so close to his heart/conduit and didn't want it pressing on the valve, so he built a section of dacron conduit that runs from his right ventricle under his sternum, then a bovine valve then another section of conduit. HOPEFULLY that would have lasted a very long time.

A little over a year later Justin was always tired again etc so we went for a check up. They couldn't get a good look at the conduit valve in either th eecho or MRI, but knew there was a blockage since the pressures in his right ventricle were so high..so he had a cath, they hoped to be able to help him in the cath lab depending what they found, but the obstruction was right where the conduit was sewn to the right ventricle ..pretty much the one spot they couldn't stent, so he had to have surgery. By the time all the testing and consults were done, it was a little less than 2 years (07) between the surgeries
This time since the valve and far side of conduit were perfect, they left that alone and "just' replaced the section of dacron that went from his right ventricle to his valve.

I'm very sorry Christopher and you are going thru this again, I know how tough it is on the kids at that age.

 

[cherylchapa]

Thanks for all the comments and encouragement everyone. At this point we don't really know anything. We don't know if he really has asthma or scar tissue adhesion or what. We will be using the same surgeon as last time (Dr. Gates at CHOC). We really won't have any definitive information until the cath. Apparently, they were not able to see the obstruction in the echo but could tell it was there from the pressure measurements. Chris has a bovine valve. I can't remember what size. There is a very slim chance that they can use the melody valve during the cath if that is the only problem. Our cardiologist (Dr. Weiner also at CHOC) doesn't know for sure if Dr. Gates can do it because he said they hadn't yet done it on his type of valve on a child at this hospital. I don't know if anyone else has either. I haven't had a lot of time to process and research. Lyn, Chris went without a valve for 10 years before this one was replaced and the damage to his heart was bad. It was enlarged quite a bit so I don't know if he can withstand letting the leak go for any period of time what with the other defects that go along with TOF. He does still have a residual VSD and thickening as well as his strange anatomy that doesn't even have a name. His first cardiologist when he was a baby said that his pulmonary artery and aorta wrap around each other like a candy can but then enter the heart in the right places. It's almost like he was trying to gor transposition but then changed his mind at the last minute.

And now I'm worried about school. It just occurred to me last night that he has not been doing well the last 2 quarters. He's been very obstinate and failed quite a few subjects despite all our methods. Even bribery didn't work. I know, but we were desperate. So now if he has to miss school for a surgery or a procedure, how the hell is he going to pass the 6th grade and go on to middle school next year? He was starting to straighten up. I'm afraid he may just give up knowing that it will be a difficult quarter to pass.We are going to need help from the school district, I think. And I couldn't talk to anyone at school about it this week because they are on spring break. Oy! I'm gonna need some meds!

Thanks everyone for listening to my rants and helping me through this. I haven't told any of my family or close friends except my mom and my boss. Nobody here gets it and I'm sure they get sick of hearing about it. They just say hang in there it'll be ok. They have no idea. It won't be ok. It's never ok when your kid is this sick. You guys are so great!

Cheryl

 

[Lynlw]

School. I don't know when your classes are done for the year, but since it's the middle of April, by the time you have the cath and schedual surgery etc, you might be able to wait for summer break and not miss any school. IF he has surgery before then, the school would have to provide Home bound tutor/tutors, for the time he is out. Actually Justin had homebound 3 different times 5th grade for a surgery he had ER in Decemeber, 6th when he had BE and then in 11th grade he was home from march until the end of the school year for surgery. He actually got his best grades and really learned the subjects well during those times. The fact that it is one on one and No distractions like in school really helped and it's amazing how in just a couple hours of tutorring a week, he stayed right up with and even got a little ahead of his class. I would start working on setting it up when break is over, if your school system is anything like ours, it might take a while approving everything and getting it started. When he had caths or stents, he usally only missed a day or 2 so that wasn't a problem. If possible we tried for Thursday cath and then he only missed thurs and friday and started back monday after the weekend off.

If you are interested in the melody valve, IF Christopher is a candidate, I'd probably go somewhere they've done a few already and not be the first. IF it is something you are considerring, Medtronic could probably tell you who has been doing them a while they do have a list/map of doctors trained in the Melody valve http://www.medtronic.com/melody/melody-trained-physicians.html there are a few in Cal. one looks like he is at CHOC.

I hope things work out as smoothly as possible for all of you.

 

[cherylchapa]

If they can do the valve replacement during the cath, then I think the Dr. said he would be out of school for a couple of weeks. And he doesn't want to wait for summer to do the cath. So if that happens, then we will need the home tutor.

It's not that they haven't done a lot of replacements via cath at CHOC. It's that they haven't done it on his exact valve. So the cardiologist didn't know if it was doable. He needed to consult with the surgeon before saying yay or nay. But his immediate thought was no. He only mentioned it so I would know all the options.

I'm hoping that this time we won't have the same issues with the insurance approving everything before we can schedule since now we have a PPO instead of a HMO. BUT the caveat with that is that we have a deductible. So I think this time around things will be much more expensive.

 

[esvaja]

Hello,

I have a son 21yrs old w/TOF. I myself just had surgery 4/6 for AVR, dialated aorta & atrial septal defect. My son had his 1st surgery & 13 weeks old where they they just pretty much stretched open the pulm valve & pulm conduit, also repaired a hole in the septum. Then @ 3 1/2 yrs we went for the full monty. They replaced the valve with a homograph & mentioned that the donor was an older teenage girl & should last til he was in puberty. He's 21 & we still have the original valve from 15 -16 yrs ago. It is leaking badly, actually for the last couple years they said the valve is pretty much gone. But he tolerates that. Why we don't know.
Last summer they said he had met 2 out of 3 criteria for re-op. This June they will do an MRI to check the exact size of his heart & if its larger than what is acceptable, they said he is a candidate for the Melody valve. U of Michigan Hospital has been designated as a trial hospital in the US for the Melody & they've been doing them for over a year. I don't know the stats yet, but like his 1st surgery they had only been operating on babies w/his severity of Tet for 5 yrs & there is no track record. But I've been told that the right side of the heart because of lower pressures tolerates "improvements" better than left side defects.
I don't know if this has helped, but you are not alone. By the way way my son also has been diagnosed w/Asperger's & he's finishing up a 2 yrs associates @ a Community College & is working @ Mc D's
.
Daiva