Eye of the Ryley!

We were introduced to a new tool that is helping us to communicate with Ryley while he’s intubated. The EyeLink Communication Board shown in the picture allows Ryley to use his baby blues as a cursor and point to letters. It’s see-through so you gaze eye to eye on the middle Duke logo to calibrate one another, then Ryley moves his eye towards a letter as you center what you believe he is looking at in the calibrated middle. Once you think you have the correct letter you just say it and he nods. You then go to the next letter until a word forms. You don’t have to wait until the whole word forms before you guess either. For instance, he blinked three times rapidly (the sign to grab the board) and we began.1st letter, M….2nd letter, U, 3rd letter, S…Music Ryley? Yes! Ok what artist? 1st letter, C…second letter, O…Coldplay? Yes! Perfect…setup the BT speaker for a little Coldplay shuffle and a subtle smile forms on Ry’s face as he closes his eyes. Speech Pathology says Ryley picked this up very quickly so we should have some fun with this over the next few days!

Ryley continues to require the support of the vent and we have had numerous pulmonary and respiratory teams in to tweak his vent settings to optimize things. They also elected to give him some additional steroids and magnesium both of which help to relax inflammation in lungs. His temp started raising again yet his cultures came back negative but white cell counts are still elevated. They had the infectious disease group up to consult. We had about six experts standing around Ryley brainstorming possible reasons for the temp…very interesting to watch. They decided to take an ultrasound of his gall bladder in the am and check liver function as well just be be sure nothing has been missed. Ryley’s neck and shoulder region remain painful so the IV drip remains for that. That won’t begin to decrease until after surgery and still no definitive timeframe for that. The surgeon MUST be sure Ryley’s respiratory system is strong enough to handle it and that there is no bacteria that could attack the implant and fusion site. Tonight’s a big night. His lungs need to respond to the new therapy so we can get his etCO2 down to normal levels.

Please continue to PRAY to strengthen Ryley’s lungs and decrease his etCO2 numbers.

PRAY that Ryley remains infection free to strengthen his immune system

PRAY for Ryley’s continued mental strength to battle through this next part of his journey.

Lastly PRAY for our neighbors in 8E who are not as lucky as Ryley and are saying goodbye to loved ones tonight and tomorrow.

I love you all! God bless and goodnight!