I think that I am just going to summarize from birth to now for everyone’s benefit as well as my own:
Feb 10 born 8:30 am via C-section
Went directly to NICU
Later on 2/10 on call heart Dr. informed us she needed to have co-arch surgery. They were going to transport Tatum on Monday
Feb 11 early evening
NICU doctor came to my room to tell me that they could not take care of Tatum any longer at Shady Grove due to lack of equipment so they vented her and transported her to INOVA
Feb 12 11am
Released me from Hospital so I could join Tatum at INOVA
Surgery- opens her up no co-arch tied off Ductess and closed her up
Feb 20 evening
Tatum was released from INOVA to come home for the first time
March saw some lame Genetic Doctor
After this roller coaster of a Feb. we saw the Cardiologist and Pediatrician every other week until June.
In June we did her first Cath. After the procedure I called my Pediatrician Office and made an appt with Dr. Desuza and decided to see her and Dr. Tesch exclusively. I felt we need a plan of action for Tatum. This has worked out great so far.
As far as the Cardiologist goes I was pretty comfortable at this time so we were just going with it. When we decided to go to Philly the Cardio Doc got a little put off and it all went downhill from there. I actually came back from CHOP still listening to my Doctors and not all that Dr Rome said. The funny thing about all of it is that we learned a huge bit of info from Dr. Rome in only one sentence, he said, “You are both aware that if Tatum’s aorta does not grow she is most likely not going to make it.”
Wow, huge huh... to bad our doctors never mentioned that…. I think subconsciously this was the first big red flag…after this it started raining red flags…. eye surgery situation and finally the firing 4 days before Christmas. I now look at the entire situation and just laugh. First of all CCA (old heart Doc) is a joke not only for what they did to us but for who they think that they are. I do not think that in my area a practice of any kind has a right to think that they are the best… especially when they are not...LOL
Yesterday we meet with Dr. Rosenbaum from DC Children’s Genetics department. He was AWESOME…he knew so much about WS and other kids I really wished we had seen him initially. I actually think that if we had a lot would have been different.
Dr. R. was very please when we told him that we were seeing Dr. Brenner later on for a Cardio Apt., he actually asked us to tell him hello…
Dr. B is the head of Pediatric Cardiology at Hopkins; he was wonderful and very knowledgeable about WS. He also has been communicating with me via email since I made the appointment…to think what I used to have to go through to get a hold of a doctor. Thankfully these days are over!
HMMMMMMMM What did we learn?…go with your gut and do not stay with the on-call practice because it is easiest…we should have started seeing Dr. Brenner in March. I remember the day I was told by Dr. Lindsay that Tatum needed surgery I said can I get a second opinion and she said yeah but you are in the hospital and do not have the time…. I should have let them do what they though was needed and upon release choose my own doctor…
Well no harm no foul and now I know!!! Sorry for such a long post. Yesterday was one of the best Dr. days ever and I cannot stress how happy and pleased I am with our new choices. Looks like a good start to 2007 :)