Thursday, August 16, 2012

O VSDPFOPDA?!?!?!

We had our follow-up appointments yesterday with cardiology and surgery.

The appointment with surgery went well.  Wasn't there 15 minutes.  Dr. Berch said her liver has definitely herniated through the muscle/fascia layer.  Not a problem.  He plans to fix it at age 1 (or even better 2 years old).  It could possibly be an out-patient surgery.  If we fixed it right now, it would just do it again.  The muscles are just not strong enough to hold it in and she is constantly going to the bathroom (like any newborn does) .. so the straining does not help matters.  We asked about wrapping her with ace bandage compression and he said that would not help at all.   I asked if this hernia is the cause of her pain that she seems to be in.  He said hernias in general do not hurt and he agreed that she has just had a rough beginning.  Hernias only hurt if they become incarcerated (meaning locked in place and not movable) and hers is not.  Good news is we don't have to see him again until August of 2013 unless something happens that we think warrants him looking at her again!  So surgery #2 is in the books for the future.  I love Dr. Berch and left the office with a smile and a good attitude towards the plan....

until I got to the cardiology department.

We knew before today that she has a small VSD, PFO, and PDA.  The PDA closed while she was in the NICU, and the PFO is not an issue.  For those of you who don't know, VSD stands for Ventricular Septal Defect.  Meaning there is a tiny hole between the two ventricles in her heart.

Merritt got a repeat EKG and echo.  I think she was having flashbacks of being in the NICU and was not a fan.  Our regular cardiologist, Dr. S, only sees neonates in utero and then passes them off after birth.  The new cardiologist, Dr. C, walks in and I spend more brain power trying to decipher his thick heavy foreign accent and ignoring his lack of a caring attitude and personality than actually listening to what he was saying.  After 2 1/2 hours all I heard was "...enlarged left side of heart... starting Lasix... early heart failure... congestive heart failure... possible surgery after 6 months of age... "   To hear your child is in heart failure may have been a phrase that is up there with "it may be livable or not livable."   Personally, I can't even begin to pronounce his last name and I don't think he took the omphalocele into consideration.  I think he looked at her strictly from a cardio perspective (doing his job I know).  Granted, this guy could be a complete brilliant cardiologist and just have no personality or bedside manner (like a few other doctors I've come across the past few months)... but I don't know for sure.  I got the feeling that he is jumping the gun a little bit by starting diuretics.  He said her weight gain was a huge indicator of her heart function.  Understandable.  Not gaining weight means her heart is not doing its job well and vice versa... but again, is he taking into consideration that her stomach is being pressed and she has "gut problems" (words from the pediatrician).   I left the office wanting a second opinion.  I was in shock because the VSD has never been a problem or caused a problem. It has always been on the back burner.  4 weeks ago everything was still fine with all things considered.  There is still a chance it can correct itself, but based on the fact that her heart is becoming enlarged, he thought she would probably need surgery later.  He was more concerned that the force of the blood leaking through the hole was causing tension/deterioration/pressure on her aorta.  The hole is directly below the aorta and is pulling on the aorta = not good.

Open.heart.surgery.  I was not prepared to hear that.  So surgery #3 is now lurking.  I was told by a fellow O (with a VSD) mom that a VSD would be the problem of choice in heart defects because it is fixable.  Good to know I guess.

Add ALL of that on top of Mati Claire getting sedated for a dental appointment today, starting Kindergarten, Mattox getting his last 2 molars, all of us adjusting to a new school routine morning, and Merritt just being Merritt (fussy and doesn't sleep).  I.am.exhausted.  I think I need drugs ;)  If you run into me in public - please disregard anything I say that doesn't make sense.

So who has experience with fixing aVSD in an O baby?  Anyone? Anyone? ;)


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8 comments:

Sara said...

No, but I can pray. A second opinion is always good!

The Purser Family said...

I'd get a 2nd opinion in a heartbeat!!

May Flowers said...

Even if he's the best doctor on the block, without the compassion, he will be lacking what she needs. Get a second opinion from somebody who will listen. You discovered that in your pregnancy! Prayers for you and the fam!

Claire said...

Carrie, I'm so sorry that you felt that Dr. C wasn't listening and didn't spend enough time explaining to you...actually understanding the words does make a difference as well! I will say that the heart problems from a VSD can develop quickly depending on how large it is or how hard the blood goes through the hole. All that said, if you are not comfortable with him, it doesn't hurt to ask to be put into someone else's clinic for next visit. I hope that you are more pleased next time....so sorry that you weren't! I hate that!

Heather K said...

HUNT DOWN JOHNNY BURNS IMMEDIATELY. LIKE IT OR NOT. I'd want a 2nd opinion, and then if they concur...I still might want to go to the "best Pedo Cardiac Hospital" in the US to have anything done!!

Pamela said...

I'm so sorry to hear all of this Carrie!! I will pray for help and clear answers through the decision making process! I was also warned/advised to switch ortho doctors in the beginning with Macy Kate before we ever even saw the doctor we were scheduled to see. Thankfully, because his(the new doc) compassion and attitude..it made all the difference. I know ya'll will make the right decisions!

Pamela said...

I'm so sorry to hear all of this Carrie!! I will pray for help and clear answers through the decision making process! I was also warned/advised to switch ortho doctors in the beginning with Macy Kate before we ever even saw the doctor we were scheduled to see. Thankfully, because his(the new doc) compassion and attitude..it made all the difference. I know ya'll will make the right decisions!

Tiff said...

Hey Carrie. Just read this. Sorry so late. Taf had a PDA. :( It was not fun. First UMC said it had resolved itself by the time we left the NICU at age 3 weeks. Then, Dr. Sluis checked him over at his well baby check up the next week, and said no it had not resolved itself, and that we needed to go see an interventionist. So then we did. They monitored it until he was 12 months. It still had not closed off, so they closed it off through a catheter at age 18 months. We got a second opinion before we did it. They both rec. it, so we did it. So glad we did, because we ended up running into a 50 year old man there the day we did the catheter, and he was there to get HIS closed off, because he had suffered a stroke!! He never new he had it, and 50% of people who don't get it closed off suffer strokes. Anyway, we had no idea the toll it was taking on him, till we got it fixed. He was a good sleeper, and then we realized why. He was worn out from pumping that blood double time when it would bypass his lungs!! We never had blue spells, but he never thrived. Once we got it closed off, within a month he had gained 9 lbs, and had stopped taking 3 naps a day!!!! He got down to one nap. Which was totally normal for an 18 month old. He also got way less respitory infections. So anyway, I know Merrit's PDA closed off, but since you still have the VSD, def. go get a second opinion, and also know if you do have to get surgery soon, it may actually help a whole lot of things like weight and crankiness. It could all be due to the heart. You never know. I agree with Heather. Go to the best!!!! Isn't Pittsburgh known for that??? The children's hospital I mean. We are praying for y'all, and I hope that it all turns out the best case scenarios!!!! You sure need a break! You are doing everything I would do.