Tube Removed, On the cheek, & whistles

October 16 - Day 123
Speaking to yourselves in psalms and hymns and spiritual songs, singing and making melody in your heart to the Lord; Giving thanks always for all things unto God and the Father in the name of our Lord Jesus Christ; -Ephesians 5:19,20

With much rejoicing, the last tube has been removed from Dean's body! Since last Tuesday, Dean has been receiving all his food by mouth. On Friday, he started receiving all his medicines by mouth. The doctor said the conservative route would be to let the tube in for one more week but I am convinced Dean will need it no longer. His skin is irritated from this tube and on Saturday night I caught him pulling on it within 2 minutes after returning with water to wash him. The nurse proudly deflated the balloon which held the catheter in place and the tube slid out of his stomach. She placed a patch over it and within hours the hole will grow shut. Dean continues to eat 100% of all his meals and I give him snacks, protein shakes, and supplements in between meals and through the night if possible. I told him I have an agenda so he must eat all his food so he gain strength and come home. Please pray that he gains enough nutrition and weight as he continues to eat his food by mouth! Dean lost 1 pound within the past week and we are working against his high metabolism. Pray his appetite increases and that he can gain at least 2-3 pounds per week. It takes between 20-30 minutes for him to eat his pureed meals now. 

At 1:20 pm, the ambulance arrived for our long awaited CT Scan of his back and neck to verify whether he still needs to wear his "turtle shell" chest brace to stabilize his back when sitting or standing. I was allowed to hold his hand and talk to him during his CT Scan. He did excellent! Afterwards he stretched his right arm up and rubbed the machine and felt the buttons. We were back to Quincy within a hour; another short trip to the hospital! We will get the results within 2-3 days. We are praying that he will no longer need to wear the brace so we can focus on strengthening his back and core muscles. 

I always shower Dean with hugs and kisses and he returns his love to me. However, his responses and phrases surprise me at times. Today, I asked him if I could kiss him on the lips and he said "no." Slightly disappointed I asked him again. Then he told me, "on the cheek" and pointed to his left cheek. I responded as he wished and he seemed satisfied. I told him he was funny and he smiled. Moments later, he pointed to his neck, his right cheek, and his forehead for kisses. I asked him again about "on his lips" and he nodded his head yes with a smile. When I told the therapist, she laughed and a satisfied grin came across his face. He listens to everything and his comprehension seems to improve daily.

In the evening, I gave Dean his recorder and he blew it for the first time! He seemed to really enjoy it and blew loudly for at least 10 minutes. Afterwards, we called some of his siblings on the phone and he said "Hi, How are you?" His volume is becoming louder when he speaks! We appreciate all your love, support, and prayers!



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