Saturday, August 2, 2008

Dr. Appointment 26 1/2 weeks

We had an appointment with Dr. Maier, on July 31, 2008. Our Dr. has been great throughout this process, but had some less than favorable things to discuss with us today.

He told us he had a meeting with other Kaiser professionals and they discussed our daughter. They have decided we have to see a Kaiser approved specialist before we can be referred to UCSF to deliver Nayeli there. Apparently, since we did not opt to do the tracheal occlusion surgery, Kaiser now wants to evaluate our situation to determine if they can deliver her. We are not fond of this idea. We had a great meeting with UCSF staff and they filled us full of confidence. Now we have a meeting with Dr Idowu, a Pediatriac Surgeon at Oakland Kaiser this Tuesday. This is pretty frustrating for us as we now have to meet a new Dr. who we know nothing about and feel as though we are kind of starting over when we were very comfortable with UCSF. We voiced our opinion to Dr. Maier and told him how we felt. Dr. Maier reassured us that this is a consultation but feels strongly that Nayeli might not need ECMO from a conversation with Dr. Idowu. We don't know how many CDH babies Dr. Idowu sees a year. We know that UCSF is known to see over 30-50 CDH babies a year.

We went home frustated, and discussed this in great detail. We are going to fight for our daughter. We are going to play it cool and see what this Dr. has to say. If he does not make us at ease, we will do what have to do to have our daughter born at UCSF. Our biggest concern is that Kaiser doesn't have ECMO machines, and our Dr. also mentioned the possibility of Nayeli being transferred from one hospital to another if she needs ECMO and when she is stable for surgery repair. This is unacceptable to us and we know from our research this is very dangerous for Nayeli. We are praying that we this appt. goes well and that we are told we can deliver Nayeli at UCSF.

We will keep everyone posted and thanks again for all of your support and prayers.

1 comment:

Elizabeth said...

And LUNG FUNCTION chants too - don't forget the lung function chants!

Doing my research for you - and keeping you all in my thoughts and prayers too!