At 3 weeks of age McKinzi was diagnosed with Encephalitis HSV1-COLD Sores (someone kissed her), epilepsy, severe brain damage, and more to come. Due to the infection she has severe brain damage. She was admitted to hospital in Forth Worth in March where she spent 21 days. She underwent numerous tests, MRI’s, EEG’s and was followed closely by several different specialists to ensure the best care possible.
On discharge it seemed as though we were headed in the right direction but 4 months later, in August, she was hospitalised again due to not feeding and extremely irritability. She had more tests and MRI’s. The results showed fluid on her brain that required immediate surgery. During the operation the surgical team successfully drilled a burr hole in the back right portion of her skull that will continually drain to ensure against further fluid retention.
After surgery she felt much better, but she was still not eating. By placing a nasogastric tube to help feed her we were praying for a huge turn around, but she continued to vomit up her food. Since feeding through the tube isn’t a long-term option, it was decided to opt for a Gastro-Jejunal button that will bypass her stomach and go directly to her intestine. If necessary this will also provide alternative way of delivering her medication as well as feeding her. The first part of the procedure has now been done and she is being monitored to see what her body can handle as regards food. Once that’s done, the final part of the procedure will be performed.
Her medication includes methadone three times a day (for pain), Atavain, Phenobarbital, Asycolvair for infection, Atavan, Clonazepam, Periactin, Prevacid, Baclafhane, Gabapentin, Benadryl, and Zofran.
Adjusting to a ‘New’ Normal
She can hear, she follows people and lights, loves music, will do ‘tummy time’ and can hold up head but when she sits up she cannot control her head. Her medication list is to make sure she stays healthy and maintains a “new” normal life! After two long months we were finally released from hospital last October and came home from hospital with an IV pole, feeding pump, feeding bags, tubes, suction machine, and triple the medication she was taking before admission.
We have had to learn to adjust to our “new” normal. We have therapy twice a week, nurses visits, and a lot of hospital follow up appointments! With Matt working, it is McKinzi and I throughout the day. Some days are worse than others. McKinzi will excel beyond any measure set before her.
She is such a fighter and has come so far from last March when we were told she would not be able to do anything. Our daughter is an angel and a blessing from God.
Today McKinzi is not on continuous feeds anymore. She eats off of a spoon twice a day. Last week she laughed out loud for 15 minutes – for the very first time!