Tuesday, May 24, 2016

Day 24: Our Home Team

Dr. Matthew Good at Highland Pediatrics was the first doctor to ask, “Has anyone ever told you that her forehead is large?” Annnnnd now we’re getting somewhere!

 After months of baby well check appointments of mentioning delays, missed milestones, and regression, no medical professional had taken any of our concerns seriously. On our first meeting with Dr. Good, I could have cried when he asked that question from pure joy that someone didn’t think I was crazy.

 Dr. Good met with Joe and I (and Tillery) for a lengthy 15 month well check appointment discussing a long list of our concerns and what the next steps would be to help us get some answers. He set us up with appointments to see a variety of specialists and a had an MRI scheduled. After a few days, he called back to let us know the MRI was being moved up because he was able to get a sooner appointment. His diligence in getting the MRI moved up allowed us to act much sooner. By the time her original appointment time had come, she had already had some tumor removed, a shunt placed, and we were very close to having pathology back and a firm diagnosis.

 During the time we were in Cincinnati, I heard from Dr. Good often. During the initial scary times, he would call every few days to check in. When we determined we would be staying there for an extended time, he started calling every week or so, just to keep updated. Some of the staff from his office also followed our story on Facebook so he would see and hear updates that way as well. This close contact is what made us comfortable to come home for 10 days in January following her surgery to replace her bone flap and before resuming chemotherapy. We called him when we first started discussing coming home, even before talking with the Cincinnati team, just to see if he was comfortable to have her back in town. He gave us a peace of mind that allowed us 10 days of being a family in OUR HOUSE. What a gift!

 Dr. Good has always had great insight into Tillery’s medical care. He is the one who recommended Cincinnati Children’s and made calls to arrange everything for our arrival the day after diagnosis. Our oncology team has also called him a few times to discuss local resources we would need and he’s always been fully willing and able to help accommodate anything we needed. Our team in Cincinnati has always bragged on what a fabulous pediatrician we have.

 In addition to Tillery’s care, Dr. Good has always been conscious of Luke, as well. Whenever he calls to check on Tillery, he also asks how Luke is handling things and if we need any resources for him. Reading Luke’s need to have a medical connection, Dr. Good has been awesome to acknowledge all of Luke’s scrapped knees and bruised elbows. He will give Band-Aids and gauze for ailments that are important to Luke and it warms my heart to see him give value to his concerns, too. Sometimes Luke is lost in this medical world but Dr. Good always finds a way to include him.  

I cannot only post about how great Dr. Good is, though. I have to also mention his nurse Tifiny, who is fabulous! Tif has been the one I call when Tillery’s temperature starts creeping up or we need extra labs run. Tifiny keeps up with when we go to the hospital and which hospital we are in and for what reason. (That’s a job in itself!) Our care manager in Cincinnati always brags about Tifiny and how easy she is to work with and how quickly things get done. Every Monday, when we go in for a “finger poke”, we have to stop by and visit with Miss Tifiny and explore her large drawer of stickers. Tillery will even chat with her and tell her about things going on in her world. (This week she was showing off her new shoes.)

 We love Dr. Good and Tifiny! They make us feel safe and they are always on our side. They listen, give advice, and help us make educated decisions when we don’t know how. They have advocated for us and been the go between among 3 different hospitals. I can’t imagine doing this journey without them. They were exactly who we needed!
We are sad to leave Chattanooga for many reasons. Highland Pediatrics is a big one. If you have kids and live in the area, I cannot say enough good things. Get your kids here!

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