welcome Becca & Gabe!
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Welcome Becca & Gabe. I am also new to the group and have found the folks here very friendly and helpful. Good Luck to Gabe. Sounds like he is a great little guy.
Lyn, I'm glad he's doing well. When did he get his pacemaker? So far no pace maker but I know that's always a possibility. So far his rhythm is good but slow. His heart rate is usually in the 60-75 range, and his PC said that's normal for him but a possible sign of damage from surgery. I hope his heart handles the next one OK. Last was 18 months, he's now 9 so the next one will be a very different experience for all of us!
Becca
Becca
Justin had his 2nd surgery when he was 18 months too (his rastelli, he had a BT shunt at 10 days) He got the pacer when he was 10 and went into Complete Heart Block during a cath that he was still in when he had an ER conduit revision the next day and also gt the pacemaker. A few months later his heart went out of complete heart block and his pacer didn't fire until his next cath, when he got stents in his conduit. that put him back into complete heart block for a fw months again. When he was 17 it started malfuncting (rare but Justin does alot of rare things) he had to get it removed, but since that one was in his abdomen and they wanted the next one in his shoulder area , which would have been another incision and hewas not in complete heart Block, they didn't put in a new one and figured they would in the future when he needed it. So far he has been fine without it (he does have Right bundle branch block and a very low HR 40s-50s, but has had that since he was a baby) He has had a couple caths and 3 surgeries since he had it removed and so far hasn't need a new pacer. Actually he isn't on any meds either.
Hopefully the next pulmonary valve/conduit replacement will be in the cath lab. We talked to Boston about being part of the trials for the Melody when he needed surgery at 19, but it turned out the valve he got when he was 17 was fine, he just needed a section of the conduit replaced so needed surgery. That was before it was approved by the FDA
Lyn, one of the girls on my truncus group is being evaluated for the cath valve, and a man in the club has had the cath valve done successfully. He needed a pacemaker after but he had a conduit replacement shortly before the cath valve, may have been related to that (around age 40, his conduit/valve were 20 years old at that point). He's doing very well. The girl is in Denver and it sounds like a team may come to her hospital so docs there can be trained to do it. I know her mom is nervous about her being one of the first though!
Gabe's first conduit narrowed way too fast, the second has been the opposite. It was stable for years though and at the last visit (in December) the numbers changed quite a bit. When the time comes I'll probably ask you a lot about how to prepare him. We didn't have to prepare him last time, I dread the next one. He hates all needles, blood work, all that stuff. It'll be interesting. Is Justin small? Gabe is tiny- around 50 pounds. Same size as the brother that's 2 years younger!
Becca
Gabe's first conduit narrowed way too fast, the second has been the opposite. It was stable for years though and at the last visit (in December) the numbers changed quite a bit. When the time comes I'll probably ask you a lot about how to prepare him. We didn't have to prepare him last time, I dread the next one. He hates all needles, blood work, all that stuff. It'll be interesting. Is Justin small? Gabe is tiny- around 50 pounds. Same size as the brother that's 2 years younger!
Becca
No Justin is about 6 foot 180 with size 13 shoes, but most of the heart kids i know are on the smaller side. Justin did tend to have growth spurts after surgeries or interventional caths I guess when he body could use the energy it needed to get blood to his lungs and his low O2 were able to go things like growing, but that was just my theory.
Speaking of size there was an interesting article today in local paper indicating from a long study, that people of smaller stature (short people) have more history and tendency for heart disease...go figure
will start a thread on that
will start a thread on that
Lyn, here is an article I came across about the cath valve:
http://www.hopkinschildrens.org/a-less-invasive-pulmonary-valve-repair.aspx
Very interesting!
Becca
http://www.hopkinschildrens.org/a-less-invasive-pulmonary-valve-repair.aspx
Very interesting!
Becca
RI Mom
Well-known member
Welcome Becca and Gabe,
I'm a heart mom too. My child is 7 and has had 3 OHS so far. The last one was last summer when he was almost 7 years old. I remember everything vividly about the preparation, dealing with the procedures, etc...so when you get closer, let me know and I'll tell you what I learned about school-aged kids and surgery. It has been vastly different each time. When he was a baby there was nothing to do but worry but when he was a preschooler...watch out! I was so caught up in his emotional state....so exhausting! As a 6 almost 7 year old, he had a much clearer understanding of what would happen and we talked up all of the "good" aspects, like visits from friends, playing videogames in his room, going to the playroom, etc.... Funny that you mention UVA as my son went to their camp for kids with medical challenges and had a blast!!
I'm a heart mom too. My child is 7 and has had 3 OHS so far. The last one was last summer when he was almost 7 years old. I remember everything vividly about the preparation, dealing with the procedures, etc...so when you get closer, let me know and I'll tell you what I learned about school-aged kids and surgery. It has been vastly different each time. When he was a baby there was nothing to do but worry but when he was a preschooler...watch out! I was so caught up in his emotional state....so exhausting! As a 6 almost 7 year old, he had a much clearer understanding of what would happen and we talked up all of the "good" aspects, like visits from friends, playing videogames in his room, going to the playroom, etc.... Funny that you mention UVA as my son went to their camp for kids with medical challenges and had a blast!!
