Kayne is in the hospital at Gainesville, Florida

I updated everyone Friday night, but we had to admit Kayne to the hospital yesterday. Kayne had a rougher day on Saturday with his swallowing and his pain was high even with all his medicine. On Sunday morning, Kayne woke up with his right side and shoulder hurting at about an eight of ten. Kirsten got in touch with Dr. G and they discussed in detail how things had been over the past few days. With the pain not under control he felt it would be best to bring Kayne to Shand's to be admitted for a few days so they could get his pain under control. He was also concerned the disease has spread to Kayne's spine due to some of his extreme symptoms. A MRI was going to be done in December, but now one is being scheduled while he is there. Kirsten took Kayne over and dropped Dementor (Moose) off with the trainer while at the hospital. I ended up staying home today so the AC could be installed. We want to be able to be cool when Kayne returns home. I will be heading over tomorrow and staying overnight with our Gainesville, Florida host family, Kemp & Terri Howell. We first stayed with them early this year for awhile when Kayne was going through radiation. We are grateful for their hospitality. Keagan was able to sneak away and visit Kayne today which helped lift Kayne's spirits. I am going to share Kirsten's updated post about how things are going so you know how Kayne is today. Kirsten's Post to Cannonballs Facebook Page 11/13/2017 - 11:30 am - Through the night, a little past 11:30 pm, the medical care team members were able to get Kayne settled and more comfortable. He is usually not anxious; however, last night a few moments of anxiety flared for him. We hugged and held each other for a long while. I prayed over him and got him calm, telling him he was getting the best care with the most loving staff and that he was going to feel better soon. �❣️� He slept more peacefully through 7:00 am. He started on oxygen during the night, is still receiving albuterol breathing treatments and increased dexamethasone to reduce swelling/pain that is potentially contributing to the significant nerve pain he is feeling down the entire right side of his body. Kayne is on a continuous Fentanyl drip with PCA-patient controller analgesia pump for rescue shots to zap acute pain. They’ve been able to get the pain down but still have a bit of improving they believe they can do for him. Since he’s on the PCA pump they may need to sedate him for his spine MRI so that his limbs don’t give him discomfort and jerk. It is typically a two-hour scan since he’s so tall. We’ll await that decision soon and will make another post with what time the MRI is so we can all be praying collectively for healing miracles and clean scans. The best line from early this morning when he kept kinking the tubing of his IV was: “No wonder Aunt Marge yanked this thing out of her arm when she was in the hospital. With all the bells and bitching going on here, this is sh*t.” I️It was so funny! I couldn’t stop laughing and then he was laughing at himself. It was a good deviation for us both. ��� I️I kid you not, the nurse would come in and as soon as she was out the door, he’d bend his arm to look at his phone, cutting off the line. Our nurse finally splinted his elbow so he can’t bend his arm. Smart thinking! ��� He ate a few bites of his “yummy” puréed eggs and “doctored up” grits with butter and sugar this morning. I helped him scroll through his phone and read aloud messages of hope and encouragement that have been sent to him. He laid still with his eyes closed but heard every word. We can feel your prayers and want you to know they are comforting to us. Please pray for Curtis, Kayne’s father, who is at home with the HVAC team while our new air conditioner gets installed. Don’t want to go home to a hot house any more. Also, pray for our other son, Keagan, as he helps Kayne each and every day with his mental and spiritual fight living with DIPG. Keagan’s strength and inspiration through all of this is also astounding. We are so proud of him and lift up Keagan in spirit too! I love Kayne’s line in his most recent video with Chris Ulmer posted last night when he says: “Family comes first.” It’s true and what God wants for us. We love you all! �❣️� Kirsten I will post another update with the latest news of Kayne's scan and when he is released. Curtis curtis.finley@gmail.com