When we couldn't find a pediatrician for Mercy I was a little worried. As you would expect, there were not a lot of doctors who were willing to try to take her on as a patient. Which was disappointing at first because we thought they really only needed to do physicals and well baby stuff like shots, ect. because she see's so many other specialists. However, now that we have a great doctor, I see why no one else wanted to do it.
I loved our doctor from the first time we went to see him. The day after we got home from the NICU we had an appointment. We got to go back right away to keep her from the icky other kiddos. It wasnt a long wait and the nurse's were very sweet and amazed at how tiny she was. The doctor came in to talk to us and told about the clinic and his background. He worked in the NICU at a San Diego hospital and we could tell that he was really about patient care. He and his wife found this place because they were tired of all of the politics that went on at the bigger hospitals. He told us he had looked into all the info he could find about this syndrome. And that we were going to expect the best and be prepared for the worst.
He told us we were going to treat Mercy just like any other little baby until she gave us a reason not to. He said we could talk about options for what to do if she has a seizure, ect. But that we not no reason to assume that her life was going to be awful and were going to treat her just like our other kids. I didnt realize how worried I was about that until I heard him say that. I thought the doctors would either, not care to look up anything about her, or assume she was just "damaged goods" So it was such a great day!
Not only that but he knew most of the other doctors we had to follow up with and suggested other, closer options. It was very nice because the Children's hospital is an hour away and in our big car, at least 25 dollars in gas. His staff has been amazing at getting us appointments (and cancelling some we did not need.) He introduced us to the other doctors in the practice in case we needed help on days he was not there. All in all it was a great experience and if he had his own private practice, I would take my other children to him too. He helped us realize that we dont need to go to every referral that we get or do every test. Some stuff can wait and some can't.
He had faith in her and her kidney's ability. When we left the hospital they had put her on a special formula, but when we explained the situation, he thought it had more to do with the additive they added to my breastmilk than her kidneys failing. To give high doses of the electrolytes to a kid with itty bitty kidneys was sure to make her numbers go up. Especially since, the actual kidney tests werent too elevated, just the calcium and potassium. He made sure with some follow up tests and we were back on track for giving her breastmilk, something that I really wanted to do.
He said that we would be able to remove the NG tube when we were confident that she was ready to have it out! The Home supply company reprimanded for not getting more for her. They said that I should have a doctor check her out before I did anything. It was nice that someone had some confidence in her and us as her parents. :) All in all we are so pleased with the doctor that we have found, and we wish that ALL doctors had his sense of patient care (even those who are administrators!) Of course we needed a special doc for a very special baby!
I am so glad that you found a doctor that you love and trust. So many moms have horror stories about finding a pediatrician they like and who are willing to give their baby a real chance. Mercy is going to blossom with your love and support~ I cannot wait to see updated pictures!
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