Maccoy has been having episodes of turning "blueish/purple" mainly feet/legs up to his calves, his hands, lips/mouth.. I was scared to death the first time it happened, took his 02 (which was low) and even ran him to Dr. to have him assessed called Cardiologist who couldn't explain why this would happen as his echo from Sept. looks "good". It happened again this a.m. and I called Cardiology again I don't know what I think they are suppose to tell me but I am confused/concerned... My thought is that his circulation is just poor and I believe this would be normal. I do remember discussing this with Dr.Kaine at our Appt. in Sept. also... Anybody else have this issue after repair?? Please Help! I am kinda freaking out
*************** UPDATE****************Thursday...11:15a.m.*************************
Dr.Kaine's office called back and said he thinks I was right in saying it has something to do with circulation and the position he is in.. He doesn't want to see Maccoy til his Regular Check up and there is No reason for a echo at this time. Really not the answer I was hoping for...
I don't give up especially when it comes to my kiddo's that being said I have made an appt. with another Pediatric Cardiologist and we see him Next Wed. hoping that goes well.
Maybe I am just overreacting but this is my child and he isn't the "normal" kid so I feel like I am paying you to see him, do an echo and tell me everything is okay not give me the brush off.
Anyway thanks to everyone for your stories and advice I appreciate it greatly!!
5 comments:
Hi, I came here from Team Ewan's blog. My son also has Tetralogy of Fallot. He is almost 4 years old and he's doing great. However it is coming time for his 3rd surgery, which will be in February. To answer your question, after the full repair, I never noticed anything like you are describing. I would keep checking in with cardiology. His sats shouldn't be much lower than 90's after the full repair (unless his case is different and there's something I don't know?). After our son's full repair surgery (he was 7 mos old), his pulmonary arteries failed to grow, which they discovered a couple months later. So he had 3 stents placed, and he has had several caths to widen the stents. He is going in for surgery soon because he is now outgrowing those stents. Although I still didn't notice any blueness when they were discovering these things. My advice is, your mommy instinct is usually correct! Keep on those doctors! :)
You have a beautiful family!
Jen Huegel
mommy to Andrew
TOF
I ditto the what the previous poster said...you are your own best advocate. Keep on the Dr.s
Thanks for stopping by my blog, and for your sweet words of encouragement. :) It's been a tough long year, but we are feeling blessed.
Marsha
I agree to stay on the docs. Liam had his TOF repair surgery back in June '10 and just had to have his conduit replaced last week due to severe conduit stenosis.
I never noticed any blue episodes...I can only remember his upper lip becoming slighty blue after bath time ? But Liam also has a small PFO (like an ASD) that blood can't shunt back and forth from causing him to desat a little when upset, crying, etc. too.
I second the mommy instinct! Especially for us heart mommas!
Praying you find an answer. Keep us posted.
Tara
Hi Melissa! Thanks for finding me on Facebook. I just jaunted over to your blog to meet Maccoy (how sweet!) and I read your post about the blueish episodes. Leah had very similar experiences. Very purple (I mean purple-purple) feet, calves, and hands (full hands, not just fingertips). We even have pictures where she's sitting with her brothers and the contrast can take your breath away. Freaked out her pediatrician every time (we were on weekly weight checks for months). He ran a pulse-ox at each appt and it was always in the 90's. This whole time we kept in touch with her cardiologist (he even witnessed it twice) and his exact words were "We fixed her...remember? If it was her heart her whole body would be blue...not just the extremities." But he did keep her on Enalapril for a few months to see if it made a difference (it didn't). So they gave it a fancy long medical name that has something to do with the constriction of your blood vessels and said most kids grow out of it before they're two. And believe it or not...she did. For the most part. We still notice it when she's really cold. But otherwise, it seems to have eased it's hold on her sweet little toes. The other important thing for me to note...she never ever acted distressed or tired when she was blue/purple.
Now please don't take our experience as Maccoy's diagnosis. I second all the other heart moms on here...keep pushing until you feel you have all the information you need. Keep it up!! And good luck!!
Keep in touch. Jodi (Leah's mom, TOF)
How soon is his regular check-up? If there is a reason the Dr is not worried, he needs to share it with you. Call him back and tell him you're still concerned. If he says not to worry, ask why not? ask at what point you should be worried - what other symptoms to look for.
If it's something he'll grow out of, can they give him a script for oxygen at night or for the episodes to help him bounce back? there are also medicines that dilate the blood vessels.
Ask if this is something Maccoy needs....and if they say no, ask why not. Ask what can be done and what should be watched.
hope things go well at the new cardiologist visit. Sometimes a fresh approach is just the thing.
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