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*blondie*
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Pulmonary Stenosis
*blondie*
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Does anyone else's lo have Pulmonary Stenosis? My dd had heart surgery last week at Seattle Children's Hospital and what I am being told by her cardiologist and what I am reading from the American Heart Association are two different things. If anyone has some information and/or experience with this I would GREATLY appreciate it!!
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Re: Pulmonary Stenosis
My DS was born March1, 2000. In July 2000 he was diagnois. We went to the dr at the Mayo Clinic in Rochester. We met with his dr. who told us that they will watch his heart. It was a week after his 1st birthday when he had surgery. They didnt have to do open heart surgery. They just went up through a vein in his leg and ballooned it opened. He had to stay overnight at the hospital and was released the next day. We went up for a check up every 6 mmonths after that and everything looks good. He has not had any problems since. At our last check up 2yrs ago they said he is doing good and not to bring him back for 5yrs. When he 1st had it done they told us if he should have any other surgeries to take amoxicillin before had but in the last 3 yrs (I believe) they changed it and they found out that he doesn't need to. If you have any more questions please let me know. My son is now 9. He also has C.P.
Hope this helps you
My DD has pulmonary stenosis and coarctation of her aorta and we see Dr. Conwell at Seattle Children's Hospital. He is the best!
Now the Dr. that did the cardiac cath, Dr. Johnson can go fvck himself. Marley developed a clot in her leg after the cath and it was really mismanaged by the whole cardiac cath team. Avoid them if you can. If not, make sure they mark the pulses in her feet before they do anything to her.
Anyway, her stenosis is mild-mod. The cath didn't fix anything and she will basically need another cath when she's 3-4 years old to put in stents.We go back every 4-6 months for repeat echos to make sure the stenosis hasn't gotten worse. Seems pretty straight forward to me. What info did you get from them?
Dr. Tom Jones did dd's cath at SCH. He was REALLY nice! The only decent person at SCH imo (the nurses and other Dr.'s were just awful through to the core!) She had/has? severe stenosis so her surgery was done at 5 days old. We have a follow-up echo with her cardiologist on Monday morning back home and we're hoping for good results!
What do you mean by mark the pulses in her feet? What symptoms of the clot were present? thanks!!
Right after the cath her right leg was mottles and cool to the touch. They kept her in the PACU for 2 hours to observe and then moved her to the floor before it had resolved and without any plan for treatment. When they couldn't find the pulse in her right foot they ordered a sepearte IV line to be put in so she could get heparin. 8 sticks later they finally managed to get it in her scalp.
Finally a residence found her pulse- it was in a spot they hadn't looked. If they knew BEFORE the surgery where her pulses were located she could've avoided numerous IV sticks.
It was just awful. We're not going back to SCH again for her cardiac cath. She's fine now but I'm still pretty bitter.
Were they able to correct her stenosis? From what I understand, it is difficult to correct by ballooning in babies. Eventually, they all need permanent stents if not open heart surgery.
Good luck on Monday and keep me updated!
Hi there
My daugher just had a cardiac catheterication (balloonplasty) this past wed to try and open up the pulmonary valve. Have they told you what her pressures are? Emma's were pretty high when awake and much lower when sleeping...they don't know how successful It was so she will have an echo in 3 months and may require surgery to fix the valve as they said It is structually abnormal as well..she also has an ASD....she was only kept in the hospital overnight and is doing well/..she has a tiny inscision is her groin. The cardiologist did say pulmonary valve stenosis does not usually cause symptoms so she will be fine at home...we are lucky to have been diagnosed as this could potentially lead to heart failure at an older age...with some babeis though It just gets better on It's own.