So Proud of Rylynn

I am here with Ry day in and day out. I would literally do anything to take away her pain and her fear. I see her struggle through the little things and the huge things. For the past few days, Rylynn has proven once again how strong and amazing she is. She has been intubated since Wednesday and much to my surprise she has been awake a lot since then. We have been lucky enough that the only times Ry has ever been on the ventilator over the past two and a half years have been post-op. We've always been lucky that she's been extubated very soon after. During those time she was heavily sedated because of the procedures and I just didn't realize that this time since we had her on the ventilator to give her body the extra help it desperately needed and not post-op that she'd be so conscience.
With no extra pain medication and only a little sedation medication to help her stay a little mellow, she has been amazing. She has not been able to speak (the tube is between her vocal cords so she can not make any sound), but has still been awesome at communicating with us. I have been able to make out most of her requests. They have to suction out her tube a few times per hour and although it makes her gag and feel the urge to cough (which looks so painful), she opens her mouth when they ask, even through her tears.
She has been begging for a drink with a straw, but has listen to me explain that we have to wait for the Doctors to say it's ok. Upon waking from surgery and feeling the tube for the first time, she did try to pull on it, but after I explained that she could not pull it out because it makes her feel better, we have not even had to use arm restraints. Can you imagine this behavior from a two year old? She has so much to try to understand and to suffer through, but every day she amazes me. It breaks my heart during the times she is scared or hurting, but I just hold her hand and try to talk her through it. I hope that these experiences at such a young age will not scar her or make her someone that she was not intended to be. I pray they will make her stronger for all the other challenges she will face in her lifetime. I pray she trusts Gilly and I and understand that we are here to help her and protect her even though sometimes she endures pain.
Here is a picture of Ry before she gets extubated today. We are praying that she is strong enough to breathe on her own.
Isn't she looking sassy today? She endured a bath and bed change yesterday evening that took almost an hour and a half. She did great and looks so much better.

Yesterday when Gilly was leaving for the aTm game. He handed Ry his tickets to look at. She DID NOT want to give them back. He didn't want to make her cry to get them back either. He eventually traded her for an old ticket stub and she held on to it most of the afternoon.

On a follow up note... last night I finished blogging and hurried to bed by 10:00. Ry was up by 11:00! We managed a couple of hours of sleep, but please say a little prayer for some more restful nights this week. I can not manage on two and a half hours. Please Ry, I need atleast 5 hours of rest if you want me sane and able to follow your medical care like I would like to.