This year has started out rough with McKenzie being admitted in January. A month or so passed with McKenzie on Elecare (new formula) but she continued to struggle with weight gain and her overall well-being was becoming more and more concerning. We immediately resumed our weekly GI and emergency department visits, hoping someone could figure out what the problem was. The fight for answers is hard, not because doctors don’t want to give them – but because sometimes, they just don’t have them. After the inability to find a solution, we made the decision to seek a second opinion.
After a day of tests at Arnold Palmer, I called Nikki and she agreed that I needed to go forward with getting the second opinion. I left the Arnold Palmer parking garage and drove 30 minutes to the only other children’s hospital I was aware of, Nemours.
I was extremely overwhelmed, we had never been to this hospital and while I had a small hope for answers – I couldn’t help but to feel I was walking down another dead end. As we sat in the emergency department, the nurse entered eight months worth of medical history – the doctor assessed McKenzie and decided if she tolerated her feeds she would be sent home. Well, McKenzie did tolerate her feeds but thankfully the GI doctor felt it would be best to admit her for observation. They took some blood samples and we waited while they prepared a room – Thank God they did. McKenzie was admitted with low blood sugar, high liver enzymes, severe protein calorie malnourishment (could have caused or already began the process of organ failure) blood in her feeding tube, severe dehydration and the Rhinovirus.
McKenzie spent a week at Nemours. Doctors did a few tests, some she hadn’t had before and some she had, they ultimately were able to help begin renourishing her, rehydrating and figuring out the bottom line for a healthy diet. While I was hesitant to bring McKenzie to Nemours, I am thankful for the instincts Nikki and I have with her as they truly helped find a solution – the doctors have set a plan moving forward and with a discharge in the near future, McKenzie should hopefully – find comfort and begin developing.
When I brought McKenzie home from Nemours, I finally felt she was on a good road to stability. We had answers, we had solutions and we had plans moving forward. Unfortunately, as things with Mckenzie’s medically seemed to be calming down – I realized I had completely shut down, as I started to take a look around – I realized my emotionless chaos left a path of destruction behind.