We had another appt at Sacred Heart and I am still not a fan. I'm sorry. I have a dear friend who had very preemie twins there and they saved their lives. It was amazing. But for us we're just not having any luck.
Today we had another ultrasound and another echo. Ug. I remember when I used to look forward to those now I'm so afraid they'll find something else wrong. We had the same ultrasound tech but a different doctor (now we've seen all 3 in the practice - yay.) Our main worry today was that his tricuspid valve would be leaking - that was the big thing CHOP was worried about when they saw his heart 2 weeks ago - although their Director thought that since it wasn't leaking at all it probably wouldn't start (based on the 250+ cases they're following.) So, the ultrasound tech says "No, it's not leaking" - then the doctor comes in (not a cardiologist) and he seems a little disoriented when he's looking at the heart - the tech has to point out that he's actually looking at it backwards. He says the valve IS leaking but not to worry about it - that the big concern is the HLHS. Um. Ok. But the doctors @ CHOP - one of the top places for HLHS research and treatment in the world - told me if the valve starts leaking Macsen will probably die in utero or shortly after birth and they won't be able to help him. ..
So do we worry? I can go from zero to worry in .06 seconds but Aaron isn't worried. He's choosing to go with the ultrasound tech's statement that there is no leaking and thinks the Doctor was confused. I requested an appt w/ a pediatric cardiologist - which incidentally seemed to offend the doctor - that I would want a *gasp*cardiologist checking on my baby's heart not an OB. Sigh. Feeling frustrated that we made the 4 hour trip, had to get a sitter for the girls, for this "uh" feeling. I'm wondering if I can cancel my high risk appts w/ this practice and just see the cardiologist until it's time to go wherever we're going for Macsen's birth.
I did get my hopes up after seeing http://health.usnews.com/
So, how to feel after the dreaded leaking tricuspid valve diagnoses? I'll try to keep from worrying until a cardiologist does an echo of the baby's heart. If they tell me the same thing I have no idea what we'll do... what we can do.
Obviously that man was an idiot. Believe the tech. That's their expertise.
ReplyDeleteGo with the tech.... and never feel wrong about asking for a second opinion and if you want to see a pediatric cardiologist... go for it! Also, are there any other high risk doctors in the area that could at least monitor? - CC
ReplyDeleteWell, you know as much as I love SHH, I told you 4 weeks ago - if you don't, you don't. Every one has a different experience and I'm with you...get a cardiologst. I adore the 2 docs out of the practice that we dealt with but you've had nothing but hassle, trouble, non-cooperation, etc. from them. Tell your local OB your troubles and tell them it's time to go elsewhere....ESPECIALLY IT THE U/S TECH IS TELLING THE MFM DOC THAT HE'S LOOKING AT IT BACKWARDS. Are you kidding me?!?!?!?! You are a lot stronger than I am b/c I would have said at that point, "I am not a fan, what cardiologist would you suggest b/c we're done here." And I would have left. Period. Go with your gut....on this SHH issue and on the hospital issue. I'm a big fan of knowing that where you are, you also have to be at peace with it...I know CHOP has the good outcomes, but if ATL is ranked up there too, it's definitely a potential candidate. You have to weigh all your options and come up with the best solution...which might mean the most practical, or possibly the most impractical. Whatever you decide, you gotta stick with it and don't beat yourself up over it later on asking "Would it have been different at ____." And I don't just mean for Macsen. Anyhoo...I've rambled on enough already. Love love love to all my Miller crew. I will get up with you after my surgery next week when things calm down. I foresee a play date or at least a get together soon. :) Love, BWW
ReplyDeleteP.S. Never feel guilty about not liking a doc that someone else does...I mean, I know you don't feel guilty but I always think back to the doc that delivered Abby. I praised him all over town about how great he was. Then he was the same doc with the twins' pregnancy and I was livid. Swore to never go back and I've told ppl stories of the trouble I had with him. Every person, every story, every situation is different....
the thecnician has seen more u/s than the ob md. he can see a 4 chamber heart but when you get to this he cannot give you a valid opinion. a neonatal cardio is going to be better as long as he has experience with those cases. 250 cases in 4 years is not much but considering that 40 years of delivering babies never had 1 case of this is enormous comparatively. the leaking possibly is kind of a stupid answer on his part and it should have been I am not certain let me show this to a more experience person and will let you know in the next 24 hrs. Things can change still between here and close to term so wait and see is the best attitude. Travelling a lot and restarting at square one every time may be more frustrating and confusing. there are no manuals for this kind of treatement and surgeries, and people,mds, will have different opinions, perceptions, and protocol as far as what they are going to do. the overall survival rate of the institution id a credit to mthe team effort and abilities. this is a first 6 months of life icu protocol. First and second surgeries are crucial and will determine the survival of the baby. the best surgeons are usualy the ones with the worst bedside manner but the can work. Your first decision, based on performance, is probably the best one. this last u/s was not done in a place that is on par with the Phili hospital. Ask the u/s to be sent to the surgeon there for his evaluation and the see. Travelling a lot will put you in premature labor and only complicate things. Hang in there
ReplyDeleteI agree that your MD is probably an idiot. Doctors are not infallible, and I've learned from my experience that the doctors that are actually good at what they do are the ones who can admit when they are unsure or wrong, and who don't mind having a second opinion done. Arrogance is an awful thing in a doctor.
ReplyDeleteIf you feel you need to switch, then you need to switch and be where you are comfortable. I switched OB practices at 30 weeks pregnant with my son, because I hated one of the doctors there, and didn't want to risk him being present when I delivered. If you've seen all 3 and aren't happy, you definitely need to be where you are comfortable and have confidence in your doctors, especially since you are dealing with a unique situation. You absolutely don't want to go through this whole experience and be second guessing everything you're told.