Friday, January 05, 2007

If I Knew Then…

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
Feb 13
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!

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 :)


Amy K said...

In all the baby books we read before becoming moms, not one ever talks about what to do if your baby isn't born perfect. You are left to stumble through the dark in the most terrifying time of your life and all you can do is your best. Following your gut and asking questions, both of which you have done beautifully, you should be proud of yourself. You have done an amazing job fighting for your daughter's life.

Kim, Grandma to Ava,ws said...

I am so proud of you! Some of these doctors are so arrogant and egomaniacal. Ava's pediatrician is a jerk sometimes. But he's open late. I wish every state had a clinic staffed with professionals who "get" WS!

Aspen said...

I have always had that fight with myself. I love Daven's Pediatrician, but he is just your average pediatrician. He has little to no experience in the WS area. Do I make a stronger push for a doctor that understands WS more? You have convinced me that it will be beneficial to Daven.

Amy is right, you have done an amazing job! Glad to hear that there are doctors out there that do understand WS. What a relief.


Kerry said...

PHEW!!! If anyone deserves a good doctor visit - it's you!!! I am psyched you had a good appointment and like this guy - and that HE seems knowledgable. You want to feel comfortable around doctors who are supposed to know more than you about medicine and health. I hope Sunday's trip turns out as great! Keep me posted -
Love -K

Anonymous said...

I have told since Emma was born that you have good instincts.I am so proud of you.