The surgeon we were meeting with, Dr W (Chief of Cardiovascular Surgery), got out of his surgery right about the time we were finished with the echo so we had a short wait while he got ready for the appointment. He came out, introduced himself, and let us know he was just going to run over to cardiology to review her echo so we wouldn't have to wait for it to be sent over.
When he was done, it was time to talk surgery. He said she is doing fairly well and we don't need to go in immediately but that he wouldn't wait longer than a month or two because he doesn't want to risk permanent damage to the heart and lungs. So he checked his schedule and his first available is April 10th so we are on the books. He did warn us that he has been seeing a lot of more urgent cases lately so it is possible we could get bumped for a baby (or babies) that need surgery right away. I'm okay with that. If my baby was in a position where she needed her surgery immediately, I should hope another family would be understanding and willing to give up their spot if their baby is like Baby I and has time before surgery becomes an immediate need. Part of the workup was to give her the official Failure to Thrive diagnosis because of her inability to gain weight. He said not to worry about it because in his experience, after surgery she will be an excellent gainer and will soon lose the label :p
Dr W was very thorough in going over everything going on. He talked about the size of her VSD and drew some diagrams about where it is and how it is effecting the bloodflow. He believes the disparity in the size of her Pulmonary Arteries is being caused by the extra bloodflow from her VSD and once the hole is repaired, the PAs shouldn't cause any problems but they will keep a close eye to make sure and Baby I may end up needing a cath at some point. The extra vein Dr E mentioned is an extra Superior Vena Cava that comes in from the left side (LSVC). Dr W says it is considered within the normal for hearts because it doesn't cause any problems and they usually don't even know people have them unless they are looking for something else. It makes the surgery a litte more complicated because they have to adapt the bypass but he says he's done it before and it isn't a big problem. The ASD was almost closed last month at cardio and they didn't see it on the echo this time--Dr W isn't sure if it is closed because they didn't get a clear view of the area during the echo because Baby I was not the most cooperative ;) However, part of her pre-op is another thorough echo so he will take a good look to see if he can see a hole so he can be prepared if it definitely needs to have a stitch or two to close it.
He talked us through the surgery, what to expect, what would happen, how long it normally takes, his expectations for recovery, etc etc. So much information.....We also met with the nurse after meeting with Dr W and she repeated some of the same information and gave us a folder full of handouts and policies and things. And a script for Baby I to go get her blood typing done so they can order the blood for the bypass machine.
It was a very long day and I am sure I have forgotten many things--information overload!
Oh, and Mr. Piper and I were talking about Dr W on the way home--we both got the same impression of kindness, knowledge, reassurance and calm. Excellent qualities to make you feel better about the fact that your baby will soon be undergoing such a major surgery...
Hi! We are meeting our surgeon on Tuesday and I am feeling extremely nervous/sick/scared over it. Reading your posts has helped me find some calm. Our little lady is 5 mo and having her ToF repair on April 19. Thank you for your posts--it's nice to "meet" a friend in the same boat.
ReplyDeleteIt is so overwhelming when you get that diagnosis and every step of the way (starting meds, surgery, etc) feels just as overwhelming. It has really helped me to not only read about other CHD families but also to write about our own journey :)
DeleteI hope the nineteenth goes well for both your daughter and your family :)