tricuspid atresia

Clare - posted on 02/12/2010

hiya marisa... Tristan had his Glenn on wednesday and only spent 24 hours in the ICU!! hes back on the ward now ... very drowsy on morphine but very stable.. docs really pleased with his progress...He's very puffy around the head neck and shoulders.. had the middle drain removed and is starving ... he's being ng fed but mite try a bottle tomorrow....thanks for ur support
clare x

Marisa - posted on 02/12/2010

Yup. So far, she's been through a pulmonary banding (around 1 month old) and the Glenn (around 5 months old). Both surgeries went smoothly, we had a post-op necrotizing eterocolitis after the banding which was unexpected (typically this is something effecting premature babies, but she was full term) and required an extra 2 weeks in the hospital. Bit of a bummer because it meant our first christmas and new years as a family were spent in the ICU...The Glenn, though a much bigger surgery, passed with much less difficulty.

Thanks for the advice about the hospital brochure - I'll look into it. Plus, we'll be doing a "tour" of the ICU with her nearer to date so it's not so scary for her, to wake up in a place she doesn't know surrounded by strangers. I also met a lovely artist who's interested in doing the animation for a book that I want to write for Zoe pre-op about her condition.

We're crossing our fingers for you!

Clare - posted on 02/04/2010

thanks Marisa.... we will be seeing the psycologist... my daughter is 3 and is very sensitive and quite smart for her age... she knows theres something happening... Unfortunatley we were cancelled again... for tomorrow the 5th Novvember... is happening next week now.... oh and my hospital does a brochurre about preparing your child for hospital... but im in dublin.. ireland !! maybe your hospital could provide this for you... did your daughter have the glenn??

Marisa - posted on 02/04/2010

and Clare,
we were really nervous that early hospitalizations and surgeries would have a negative impact on our daughter, make her less outgoing, more fearful, timid. However, after speaking with the hospital's children's cardiac unit psychologist (which I HIGHLY recommend if there is counselling available to you) we learned that studies have shown that there is little to no difference between development of children who have had early, intense hospitalizations and those who have not EXCEPT (!!!) in cases where the parents negatively emphasized their children's dignosis. For example, overprotecting your child ("We can't play with other children because you're weak and might catch a cold") or calling negative attention to their diagnosis and subsequent treatments ("We need to cover your scar so that nobody knows"). Even though the surgeries were incredibly difficult periods, it was comforting to know that we were in control of limiting the residual after-effects. Sending you strength, love and courage.

Marisa - posted on 02/04/2010

Thanks for sharing. Our daughter is 2, and we're anticipating her Fontan this fall.

Have any of you had experience flying long distances with your children, pre-completion of the fontan? We want to visit our family in the states but are nervous about the low oxygen / pressurized environment of the plane flight.

Also, did you find any kids book that you could share with your toddler to help them get used to the idea of surgery? hospitals?

Clare - posted on 01/19/2010

Tristan was meant to have his glen shunt on Thursday 21st Jan but its been cancelled.... Frustrating but understandable i suppose...He is well so at least we dont have to worry about him.....

Clare - posted on 01/07/2010

thanks marilyn..... good to know... thanks for the advice xx

clare

Marilyn - posted on 01/05/2010

Clare,
Hey I read your letter and hope that everything turns out well. It definitely does not go away but you can cope with it and learn strategies to make it better. The surgery unfortunately is just one thing to get through. I found that the hardest part for my son having surgery after age 1 (he had two before age one and two after age one) was the depression he had. It was very hard to watch him not smile for days at 18 months. His favorite books, movies, stuffed animals did not work. I am not sure if that is the norm but the doctors and nurses said it was. Hopefully this will not be a problem. There really is not much you can do. I would def. journal when you have a quiet moment because you will want to look back at this time to remember how your feelings change and how you got through for the next time. Good luck!

Clare - posted on 01/04/2010

hiya moms.. my son tristan was born with tricuspid atresia also...plus others... double outlet (L)ventricle, pulmonary stenosis,dextro-cardia,transposition of the greater arteries!!! He actually didnt require banding becoz of the stenosis.. but should be having his bidirectional glenn before he's 1... he is just gone 6 months old...... how did you cope with the surgery pre and post op?? this is wots frightening me... whats worse ... im a nurse!

clare x

Tawnya - posted on 05/20/2009

Hi Lisa! My daughter has tricuspid atresia and had the glenn and fontans. How does the pulmonary atresia affect him?

Tawnya - posted on 05/20/2009

Oh wow...I have twins too! My daughter didn't need the pulmonary banding but had the 2 other surgeries you mention. My daughter is about to turn 3. Isn't modern medicine a blessing!

Marilyn - posted on 04/13/2009

Lisa-

My son was born with pulmonary atresia with an absent tricuspid valve and underwent three open heart surgeries - had the bidirectional glenn shunt and fontan surgery. We had first and third surgery at University of Maryland and second at Boston. His last surgery was at Hopkins in the summer of 2007 to open up a blockage. He is 14 years old. I have never met anyone that had same surgeries. Hope we can chat again!

Marilyn - posted on 04/13/2009

Lisa-

My son was born with pulmonary atresia with an absent tricuspid valve and underwent three open heart surgeries - had the bidirectional glenn shunt and fontan surgery. We had first and third surgery at University of Maryland and second at Boston. His last surgery was at Hopkins in the summer of 2007 to open up a blockage. He is 14 years old. I have never met anyone that had same surgeries. Hope we can chat again!