http://www.amberjoygiles.blogspot.com/
We are so grateful for the miracle we've witnessed with the cessation of the continuous seizures. This is such a blessing. However, since Wednesday's update, she has had a couple of really intense, though non-convulsive, seizures that manifest themselves clearly on the EEG machine. Yesterday, they were unable to control one that came in the middle of the night with the medications she's been getting, so they began her on phenobarbital.
Phenobarbital is an anti-seizure medication from the same family as pentobarbital, which is the medication that induced the coma when she was having continuous seizures. Phenobarbital does not have as strong effects as the pento (thank goodness!), but it does have a sedative effect. It allows her brain to be calm without sinking her into a coma. Since the pheno makes her tired, it's definitely slowing the waking up process, but she is still doing very well, showing great signs of waking up.
Yesterday, they were able to remove the ventilator and give Amber a tracheostomy, which means the breathing tube is now hooked up at the tracheotomy site. The doctors said that they typically would have done this earlier, but they did not anticipate her being in the hospital this long. Amber is successfully breathing mostly on her own, but the tracheostomy machine kicks in when she needs a little help.
Last night, Amber showed us one of the greatest signs of “waking up” when she responded to the voices of JP and her parents with a quivering lip and tears streaming down her face. Amber is not yet able to focus her eyes on anyone or track movement with her eyes, but we do believe she is listening. Julie and Greg were able to calm her, but I'm sure she's pretty scared and confused, as she is starting to take in everything that is going on around her.
This morning, when Greg called in to the hospital early, the nurse who cared for Amber during the night said she blinked her eyes and nodded ever so slightly when spoken to. She had no seizures during the night.
Today, she showed similar signs of recognition and emotion when JP was talking to her and then also when her mom and sister were talking to her. One of the medical team told us that these signs of emotion were very positive signs, as emotion points directly to Amber's personality, which is a good sign that she is doing well waking up.
But best of all so far?
This afternoon, JP and I were talking to her telling her how much we loved her and were so happy to see her. She was wide-eyed, still not tracking yet, but listening. Then JP asked her to take a long blink if she could hear him. She very deliberately opened and closed her eyes slowly. Good job, Amber! Her eyebrows even arched up a bit.
Elated and encouraged, JP then asked, "Can you smile for me?" With every ounce of energy she had, she slowly pulled her cheeks and the corners of her lips up and mustered one of the most beautiful smiles I've ever seen! She can hear us! She is responding as well as her body will allow right now, and we are overjoyed with every effort she makes. About thirty seconds after the huge achievement of smiling, she was back to sleep.
Amber spends most of her time sleeping. The phenobarbital makes her drowsy, but this is okay because we all know (thanks to our moms) that sleep is often the best medicine. That's right, just rest Amber. Rest and heal.
Our hearts are filled with the wonder of life. Thank you everyone for your faith and prayers. Great miracles do still happen, as has been witnessed in Amber's critical situation. Amber still has a long recovery ahead of her. We are full of faith and trust in our Heavenly Father and know he is watching over Amber and blessing us at every turn. She will pull through this.
“I, for one, have never known a woman with more strength and courage than Amber once she decides to do something,” Julie said. It will take time, but we can be patient and put our trust in our Father in Heaven. “We have truly been blessed.”
We love you all and are so grateful that you have joined with us in supporting Amber! We love her, and we know that you do too. Thank you. We love you all!
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