The GPS was off this morning as we took the trip from Naperville to Chicago, bringing our Ella to Children's Memorial Hospital (CMH) to have her g-tube placed into her tummy. We didn't need the GPS since we have been to CMH seven times since the beginning of the year. The route that leads us here is now in our minds. A route I'd rather not take but know, for the health and well-being of our daughter, is one that we must take.
Each time we come here it is a little bit different. The stakes and implications are synonymous with change.
Our first visit was with her current head neurologist, Dr. Nancy Kuntz. We spent time with Dr. Kuntz getting to know one another. We talked about Ella, about us, and about Dr. Kuntz. We left feeling good about having her as our head neurologist. We still feel that way today.
Our second visit was scary. She had pneumonia and RSV. We weren't planning on being here, let alone for 6 days. We were introduced to a host of machines, a wealth of medical information, and a new life for our family upon our return home. It catapulted us into the world of mechanical support for Ella.
Our third brought to us the enormous responsibility of being an advocate for Ella. We came in response to her struggling at home with energy levels and nutrition concerns. We spoke on her behalf to the CMH staff, advocating for her best interests. We left with answers and a plan for Ella.
The fourth visit was with the nutritionist. We placed Ella on the Amino Acid (AA) diet which is basically a diet that provides excellent nutrition and is easier for her body (having SMA) to digest. It is a highly specialized diet and the nutritionist has been supportive in our efforts to provide for Ella.
The fifth visit actually occurred on the same day as the fourth. An opening for a sleep study became available while the nutritionist appointment was taking place. Since it was a cancellation, Lindsay had to travel back to Naperville for supplies and then return to CMH. The sleep study ultimately resulted in Ella's bipap being set at optimal settings for her...settings that would provide excellent breathing support while she sleeps so as to conserve energy and aid in chest development.
Ella's sixth visit to CMH was to follow-up with her pulmonary specialist, Dr. Prestridge. From this appointment the stage was set for the continuation of all we had advocated for in terms of respiratory and nutritional support as well as receiving valuable information about Ella's "respiratory plan" for her g-tube surgery.
Which brings us to the seventh visit to Children's Memorial Hospital. The g-tube surgery. Watching one of her surgical team members (the anesthesiologist) taking her from us and into a place where they would put her under, cut her open, and place an invasive piece of equipment into her body that will be present for the duration of her life, was tough. We placed our trust in the doctors and the CMH staff.
Ella's surgery went well. We came into the PICU and sat with her as she slept after the procedure. I could see the muscles in her body methodically "twitching" as she slept, something I've grown accustomed to with having a child with SMA. She woke up with mommy and daddy in the room about 3 hours after surgery began.
She's a bit dazed and uncomfortable as she gathers herself from being put under and surgically invaded. She recognizes her "owie" and seems to know that she is here to be taken care of by all those around her.
When we leave CMH this seventh time we will walk away with yet a different SMA related responsibility. We know that the g-tube is a positive step for her health...it does, however, carry a reminder of what we are dealing with in terms of her disease.
We didn't need a GPS to get here. We don't need a "GPS" to navigate CMH. The path that SMA has us traveling doesn't register with any "GPS"...we rely on one another, our family, friends, and community to do all we can to give her, Ava, and Henry the best life experiences possible.
