Good news and bad news.........

[Abbanabba]

Thanks for the rundown Janet. With any luck Katie's surgery will go really well and who knows what surgical advances lay down the road? Hopefully by the time she may need something again, it will be a much simpler procedure.

Meanwhile, the good thoughts are still flowing your way....

A : )

 

[cjenkins]

Janet,
I am very sorry to hear about your daughters struggles! But I do know what you are going through, my son Evan (6 years) recently had his Fontan and it has been an uphill battle! His surgeon did an AV valve repair at the same time and we just found out 2 months post-op that it is leaking again. They started him on digoxin in hopes that his heart will stop working so hard and shrink down allowing the valve to close, it may be a long shot but we are praying for a miracle especially after the trauma of the last surgery. Evan was 9 hours in OR and twice on heart lung bypass, they had to go back in because of complications. Then multi-organ failure in icu, a very close call for a liver transplant, fears of brain damage, and many more scary events. He finally left icu after 2 weeks and a near nervous breakdown on my part! We were a month in the hospital which was so surprising for us since he was out of the hospital in 9 days after his Glenn Shunt. He has pleural effusions around his right lung which just caused us another week stay in the hospital but I guess this is common after the fontan. I was very surprised to read your daughters diagnosis as it is very similiar to my sons, he is heterotaxy w/dextrocardia, asplenia, ASD, VSD, TGA, TAPVD, pulmonary stenosis. The plan for him is to follow his "significant" leak closely with 3D echoes, O2 at night, and if the drugs don't work then a valve replacement. He is still quite blue and mild clubbing is present, but he had a fenestrated fontan so hopefully when that is closed his O2 will increase and all will get better! (sats are 79-85 right now, 70-75 when he is sick as well). I wish you and your daughter all the best and we will say a prayer for her. Just remember you are not alone in your struggles and you guys will get through these hard times!

-Shauna
(Edmonton, AB Canada)

 

[gijanet]

I'm relieved to see that this is an old post.........

I'm relieved to see that this is an old post.........

I thought I had finally lost that little piece of mind I have managed to salvage after these past five years............ I could not remember writing about "good news and bad news recently"!

Shauna Welcome to the group. (((hugs))) I'm sorry you have to be here, but this is a wonderful group of people. While most are adult valvers or wanna-be valvers D not really, of course, but they are in the global surgical waiting room), there are some parents on here, too. Regardless, this is a very supportive, compassionate group. You will grow to love them, too. When you get a chance, start a new thread in this forum (the heart forum) and introduce yourself and your son, so you can be officially welcomed by the masses as they won't be "looking" for you here.

I'm sorry to hear that Evan is having such a tough time. (((hugs))) Believe me, we have been there, too. This thread is actually a year old, so Katie is now post-fontan and wielding a mechanical mitral (common AV valve, in Katie's case). We, too, had a very rough go...........two surgeries in one day. Our surgeon repaired the valve again and performed the fontan. Before she left the OR, her blood pressure bottomed out, and they had to open her back up. In order to get a good repair, the valve was too tight, and Katie's heart couldn't handle it, so we got a Carbomedics valve. We, too, spent almost a month in the hospital. The whole story is at http://www.valvereplacement.com/forums/showthread.php?t=11945&highlight=katie .

WE do have lots to talk about. When I was searching prior to Katie's last surgery, I could not find one other mom whose kid had had the fontan and a valve replacement in the same surgery. I did find a mom whose son had had the fontan and then had to have a valve replaced. We still stay in touch. I will e-mail you as I just checked and I can do that, and I'm not sure if you know how to work the PMs yet. That took me awhile. Also, there is a Yahoo group for Asplenia/Ivemark kids, but we have pretty well turned it into a mixed heterotaxy group, some polysplenic and some asplenic. I'll get you that addy as well. There is also an adult CHDer on here with heterotaxy, gnusgal (aka Niki); she is our mentor and our hero. She just turned 29 (for real!)

Talk to you soon. Look for an e-mail. Many hugs. Janet