Monday, November 8, 2010

Finding a Great Pediatrician When Your Child has Down Syndrome - What to look for

Jacob has been home a total of 4 days and we had our first doctor's appointment with his Pediatrician. They were recommended by every doctor in NICU as well as a couple of my friends who have children with Downs Syndrome.  So obviously, I had high expectations.  Aside from the the ladies at the front desk, I was really quite impressed by them.
Down Syndrome, Downs syndrome, Trisomy 21, Down Right Living

 I met with my doctor who checked his oxygen levels (good), his weight (he's gained almost 1 lb since birth), his liver and heart (for heart failure), and an assortment of other things.  She was great about answering all of my questions and taking time with me to make sure I knew exactly what I was in store for.

 Down Right Living - the blessings of having a child with Down syndromeShe made sure Courtney got her flu shot so that Jacob would be less likely to be exposed to the flu.  Since virtually EVERYONE in our family has been sick except for Jacob and me, I asked her when I should come in should I begin to see symptoms of a cold or the flu in Jacob.  She informed me that he has no threshold which means that the first sign of sickness I needed to bring him in.

We talked about the signs of heart failure (our cardiologist informed us to expect heart failure in the first month) which includes weight loss, sweating while or after nursing, panting, an enlarged abdomen from his liver, listlessness,etc. She checked him for the signs and said he looked well.

I asked her about when to get him circumcised, and she informed me that she did not recommend circumcision before his heart surgery unless he was already going to have another procedure because it could be too traumatizing for him right now (wow!)

Then she informed me that she wants to see me every week to monitor him and his health.  Plus, she does NOT want him in the waiting room when we come to visit where he'd be exposed to the other sick children, and that she'd make sure I was immediately directed to a room in all subsequent visits. 

 Down Right Living - the blessings of living with a child who has Downs syndromeI left the appointment feeling like I now had a doctor that:
 1) knew what she was doing and had a lot of experience in Jacob's disability.
 2) She cared about my concerns and was happy to spend as much time as I needed to make sure I was fully informed and prepared for upcoming events.
 3) I had been WAY too nonchalant about Jacob's condition and I needed to be much more diligent about his heart defect and keeping him germ free. 

Needless to say, I am hunkering down and preparing to be a hermit for the rest of the winter.  Luckily, the darned boy is so cute I think I could spend a YEAR just cuddling and watching all of his facial expressions!  It's hard to give him up to his dad in the evening so that I can work and get things done. 

He literally eats, then sleeps for 4 hours and repeats.  It doesn't matter how loud it gets around the house, or if I need to take him in the car to drop Nathan off for school. He just sleeps through it all and wakes up just long enough for me to feed him again.  Needless to say, it makes getting things done around the house MUCH easier! :)  How was I so blessed to have such a relatively easy baby? ....OK, aside from all of the doctors appointments I will apparently be having each week!!!

No comments: