So a few weeks after the final dose of ACTH, some of the major side effects are dissipating. She still has a NG-tube in her nose, but no cannula taped to her head as she no longer needs supplemental oxygen. Her blood pressure is returning to normal even as we titrate her hypertension medication down. Her mood and disposition are improving, and her awake times are increasingly filled with happiness. There still exists daily periods of inconsolable crying and fussiness. I think as we embrace the probability of this activity, it somehow seems easier to manage. Now that her brain activity is stable, she has started to develop again, and it almost seems like we are starting over at day one, but she is nearly 4 months old. This good response with dissipating side effects in the world of pediatric epilepsy, is commonly referred to as “The Honeymoon Period”, as it is filled with joy, development, and seizure freedom (or at least good control).
We are struggling with bottle feeding a consultation with the GI doctors results in the decision to install a permanent G-Tube. She isn’t aspirating, but her suck is weak and she tires quickly which shortens the feeding cycle. The doctors feel she isn’t getting enough nutrition, and as a result, decide accelerate the procedure timeline. So, a Monday morning clinic visit transformed into a 3 day hospital stay. The process was multi-staged. She first had a temporary g-tube installed where the tube was inserted into her stomach through her mouth, and then out the newly created hole to the outside world. The end of tube in her stomach has a large disc that cannot be pulled through the hole and aids in creating compression in the tissue layers. This apparatus had a fixed length of tubing that we had to manage with tape. This was left in place for about 2 months while the tissue fused together fully to create a clean hole directly into her stomach. At this point, back to the hospital to remove that tube and install the peg style tube we have now. It is inserted into the hole and then a balloon is inflated on the end of the peg inside her stomach with water through a special port on the device. It is quite ingenious. It is low profile, and while still odd to the inexperienced caregiver, very durable and easy to operate. [Looking back, it was probably the single most helpful prophylactic measure we took for Savanna’s health. It was great advice from honest doctors, and we were really fortunate to have listened to their council.] Savanna never liked taking medications orally, so all daily medications go through the g-tube. her discomfort from the procedure was minimal in the grand scheme of things. A day or two of pain, but after that, very easy to maintain.
As we entered this Honeymoon period, she continued to respond well to the medications and began to thrive. There were certain times that were still difficult, but we really needed to take full advantage if these ‘good times’. She clearly had significant developmental delay that was global in nature, and it was time to start occupational and physical therapy.
So, therapy includes working on gross motor skills such as rolling over, reaching for things, sitting up etc. She really dislikes ‘tummy time’, and she struggles with putting weight on her arms and legs. To this day, it is a significant focus of her care. We also work with her on fine motor skills, such as holding toys in her hands, switching a toy from hand to hand. Cognitive development is stimulated with texture books, musical toys with lights that require input to function. While all different, many if these skills are combined when working with her. In addition, we will have to work on her social skills, language, and feeding. While safe for her to eat thick baby foods, she has a pretty strong aversion to having those foods in her mouth.
Seeing her smile at us and begin to follow us with her eyes was the best feeling in the world. Rolling ever came easily and quickly with our other children, but was a huge milestone for her that we celebrated. To see her refuse to put weight on her arms and legs is increasingly frustrating. With each passing day, the real magnitude of her delay and her ability to learn is becoming clear. Many milestones that Austin, her twin brother, breezes through are major accomplishments for her. In spite of her challenges, Savanna honestly appeared as though she was experiencing some level of happiness at times, and it was great to witness.
During this time we made big life decisions that included moving the family to Texas, and buying a house. Rebecca had the ability to make a lateral move within GE, so we decided I would stay home to raise kids and manage Savanna’s care. This seemed like the natural progression for our family, but it has been a significant adjustment for both Rebecca and I. We made the move to Houston mid-June. [We have looked back a few times with respect to Savanna’s care. Her case is so complex, that there needed to be a transition period between the neurology teams. Fortunately, her doctor in CA is genuinely concerned for her well being, and has provided guidance and leadership through consultation a number of times as Savanna’s condition has changed significantly since moving to TX.]
We are starting to get the house settled and it definitely feels like the right move overall. Tristan and Brandon are enrolled in a faith-based preschool program that allows me a couple of hours a day to focus on all aspects of Savanna’s care. They met new friends and are really enjoying our new home and nearby lake. Austin has just taken off with his development. He is right there with the big boys throughout the day and is on the cusp of walking. The boys truly are a joy and really help keep the keel of our ship even. So, we knew we were going to make a big trip back to CA for David and Brittany’s wedding. Not knowing who Savanna’s Epileptologist would be in TX or if we might experience a lapse in care, we had scheduled a routine 36 hour video EEG at CHOC where we have already spent so much time.
So, we knew we were going to make a big trip back to CA for David and Brittany’s wedding. Not knowing who Savanna’s Epileptologist would be in TX, or if we might experience a lapse in care, we had scheduled a routine 36 hour video EEG at CHOC, where we have already spent so many hours. We were really looking forward to that, as we would also get to consult with our Epileptologist about our current situation in TX. So we were excited on all fronts to make the trip. After all the preparations, Rebecca arrives home from a short shipping spree at the dollar store with the boys after school, and we are off. It is a long, long drive to CA from Houston, and this is where Savanna’s journey takes a somewhat unexpected left turn.
We arrive in CA, and on the first evening unfortunately witness Savanna have a seizure. We both say it and knew right away what we saw. We saw both eyes deviate to the left and complete loss of tone. It escalated rapidly, and she began to have cluster episodes over the coming days. Fortunately, we had the 36-hour VEEG test scheduled so we did not have to penetrate the thick membrane in the bowel of the hospital to receive appropriate care (otherwise known as the emergency room/center). We were warned that this would probably happen to Savanna, but what transpired after that day no parent can plan for emotionally. It was devastating. We both knew what the future could bring for Savanna and often wondered what path’s she will take on her journey. Not knowing when her situation was going to change, keeps us in a constant state of heightened awareness, and it is exhausting. Apparently, the time for some change is now. As we drove to the hospital together August 16th, the moment was somber and old emotions about our new situation were bubbling up from many moons ago. Even though the words weren’t spoken, we both knew ‘the Honeymoon was over’.