I haven’t had as much time to blog since Nathan’s been home. I’ve been getting used to rocking a baby while an imaginative three year old entertains me with his pretend play of fireman and restaurant. You should see what my house looks like! If it weren’t for my mom here to help pick up the endless mess, I don’t think I’d be able to find my toothbrush. The big adventure this week (besides the grocery story) was going to the pediatrician’s office for our first post-NICU visit.
While we were still in the NICU we learned of a primary care alternative through Seton called the Children’s Complex Care Clinic. It’s a research program set up for kids with complex medical needs. The idea is that the clinic becomes your medical home. When you come in for visits you are able to get consults from multiple specialities without multiple doctor appointments. In theory, your medical care is more coordinated among all the specialists and lower cost. Since it’s in the test phase now participants get randomized into the study. You either end up in the clinic or as part of the control panel.
When the representative from the CCC came to talk to us in the NICU and explain the program she kept saying, “It’s better care.” As I was listening to her talk it was easy to be convinced that “yes, that would be better care.” But I also found myself thinking, “God knows what’s best for Nathan. He ultimately knows what better care looks like for him.” And so I began praying along those lines.
The day after the CCC lady visited us, she called to tell us that we were not in the clinic but part of the control panel. That means someone will call us to conduct a survey on the quality of Nathan’s medical care once a year. We were initially very disappointed.
Since we didn’t get into the clinic we decided to take Nathan to the same pediatrician that Mac sees, Dr. Holmes. Come to find out Dr. Holmes was a resident at Dell and spent a lot of time there in the NICU just a few years ago. Our neonatologist spoke very highly of Holmes and was confident in his ability to care for Nathan. When my husband called to talk to Holmes, he found out that he has another patient with similar feeding issues and a G tube. Things were coming together.
On Monday we marched into Dr. Holmes office with our brand new baby, three bags, a feeding pump, car seat and folders of paperwork. It was quite a sight to see. That line there in the picture is the feeding tube hooked up from one chair to the other chair where I’m holding Nathan.
Dr. Holmes spent over an hour talking with us and learning more about Nathan. He really impressed us with his willingness to take on our kiddo and go above and beyond for his care. One of my concerns was paying for every single after-hours phone call (cause I’m thinking we’ll be needing that a lot). Dr Holmes gave us his personal cell phone number and email address. Another concern of mine is finding parent support. Holmes already put me in touch with a mom of one of his patients who has a rare syndrome and is willing to talk with us. He’s willing to make referrals to these specialists and will try to move up appointments. On top of everything, his office is in Cedar Park which means one less trip down to east Austin for Nathan and me! All in all a win-win for our family. God is providing His best for us and for Nathan.
I really do think that the CCC model is a good one. I hope that I don’t skew their research results too much when I answer their survey questions because so far I am loving our primary care option.
My book, Beauty in Broken Dreams: A Hopeful Handbook for the Early Years as a Special Needs Parent, is now available on Amazon!
Also be sure to check out my list of Favorite Books on Disability!