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| Ella's an old pro at the doctor routine... |
We arrived at Children's Memorial Hospital at 2:50 pm for our 3:00 pm appointment.
We were in the wrong building.
Dr. Nancy Kuntz was 8 blocks away.
The hospital has a shuttle service to the location. We decided to go that route and hopped on the shuttle. By 3:10 we were signing in to the neurology department.
Our consultation with Dr. Kuntz was about to begin.
We had heard from several sources that Dr. Kuntz is an incredible pediatric neurologist who has dedicated her career to neuromuscular diseases, including SMA. She is highly respected among her peers, has a reputation of being proactive in the care of her patients, holds a firm grasp on the current research being performed, and takes a vested interest in conducting her own research with whatever facility she is associated with as a professional.
Ella wheeled herself into the office in Lincoln Park and Dr. Kuntz's staff welcomed her with open arms and smiles. Ella was instantly comfortable. We were quickly assigned our room and spent some time with Dr. Kuntz's nurse. She was a pleasure to speak with. Her energy was vibrant, her obvious love of her work shone through.
Upon completing the preliminary meeting with the nurse we had the pleasure of spending some time with Dr. Kuntz's resident. She talked with us extensively about Ella, asking us pointed questions, and helping us to feel even more comfortable being there.
Dr. Kuntz entered the room after her resident had apprised her of our conversation. The resident was with her. Dr. Kuntz sat in her chair and took one look at Ella. They both smiled at one another.
Dr. Kuntz let us know that she was going to talk with us while she watched Ella. She wanted to see how Ella moves and interacts with her environment. The resident sat with Ella on the exam table and they colored, ate snacks, played, and had "conversations". Dr. Kuntz was true to her word. Throughout the entire consultation she maintained her focus with us yet was able to evaluate Ella as she acted naturally.
Of course, the conversation began with our concerns we have for Ella above and beyond the SMA. One of them being the question of "are we, as her parents, doing everything we can to help her?" The other being a question of her recent inability to sleep soundly through the night.
Dr. Kuntz approached our questions with a wonderful bedside manner. She was soothing in her speech, knowledgeable in her expertise, straight-forward with her answers, and positive in her delivery.
We felt uplifted. We felt that she could easily offer us a plan of care for Ella that would keep us feeling that we were truly being proactive with the care of our Squishy.
In respect to Ella's inability to sleep Dr. Kuntz recommends a sleep study. She told us that this can now be done at home! We would be trained in how to set everything up and the results are recorded in a small computer. Children with SMA many times have difficulty getting enough oxygen when breathing due to muscle weakness, and this is usually first noticed during sleep (when the muscles are working less anyway).
She also thought it might be good to perform a swallow study. This is to make sure that Ella has maintained her ability to to swallow correctly. Again, the results of this will help determine future directions we can take. One option we talked about was inserting a feeding tube (g-tube). Of course this sounded drastic when first mentioned but we were quickly into the conversation of how she would continue eating as she normally does now but having this tube in place would give us a way to more closely monitor and control caloric intake.
Dr. Kuntz approached our questions with a wonderful bedside manner. She was soothing in her speech, knowledgeable in her expertise, straight-forward with her answers, and positive in her delivery.
We felt uplifted. We felt that she could easily offer us a plan of care for Ella that would keep us feeling that we were truly being proactive with the care of our Squishy.
In respect to Ella's inability to sleep Dr. Kuntz recommends a sleep study. She told us that this can now be done at home! We would be trained in how to set everything up and the results are recorded in a small computer. Children with SMA many times have difficulty getting enough oxygen when breathing due to muscle weakness, and this is usually first noticed during sleep (when the muscles are working less anyway).
She also thought it might be good to perform a swallow study. This is to make sure that Ella has maintained her ability to to swallow correctly. Again, the results of this will help determine future directions we can take. One option we talked about was inserting a feeding tube (g-tube). Of course this sounded drastic when first mentioned but we were quickly into the conversation of how she would continue eating as she normally does now but having this tube in place would give us a way to more closely monitor and control caloric intake.
Lastly she spoke to us about the cough assist machine and the bi-pap machine. A cough assist machine literally "coughs out" any secretions she has in her chest (that she can't cough out on her own), by forcing air into her lungs and then rapidly sucking it out. A bi-pap machine is a device that she would wear when she sleeps to help her lungs fill to capacity (without giving her oxygen). Both are important, she stated, to begin early to help Ella get comfortable with these devices for when the time comes to put them to use.
Up until this point, our thoughts about these more intense "interventions" were that we want to hold off as long as possible, so that Ella can use her own muscles as much as she can. But Dr. Kuntz put it very nicely... we don't want to wait for an emergency to get these processes started. We want to be prepared ahead of time, for when she needs additional assistance.
If and when she gets any of these interventions, she won't automatically be using them full time. They will just help her here and there, as needed. Like a supplement. For example, using a cough assist machine and bi-pap can help prevent her from getting pneumonia, especially if she develops a cold. And a feeding tube can be very beneficial if she becomes ill and isn't getting enough calories in a certain amount of time.
The conversation then made a turn to how Dr. Kuntz runs her clinic. This is a multi-disciplinary team of doctors that includes Dr, Kuntz (neurologist), pulmonary specialist, cardiologist, orthopedic surgeon, PT, OT, speech, dietician, among others. This team of specialists all in one place is exactly what we feel we have been looking for. Dr. Kuntz indicated that if Ella were to become her patient she would like her to come to clinic every 3 months in addition to any other needed appointments with the specialists in-between.
Children's Memorial Hospital is also known for its research facility (which is one of the reasons they recruited Dr. Kuntz from The Mayo Clinic) as well as its cutting-edge technology.
Children's Memorial Hospital is also known for its research facility (which is one of the reasons they recruited Dr. Kuntz from The Mayo Clinic) as well as its cutting-edge technology.
There are so many excellent options for Ella in the Chicagoland area and we are fortunate to have opportunities to explore all of these.
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| Ella took to Dr. Kuntz right away. |
