Tubes, Wars, Straws, Keys & Tools

I beseech you therefore, brethren, by the mercies of God, that ye present your bodies a living sacrifice, holy, acceptable unto God, which is your reasonable service. And be not conformed to this world: but be ye transformed by the renewing of your mind, that ye may prove what is that good, and acceptable, and perfect, will of God. -Romans 12:1-2

September 27 - Day 105

Dean was agitated because he needed to be changed and in the process of grabbing at his pants he must have grasped his feeding tube and pulled it out. The day before I had to watch his right hand constantly because of his bladder spasms which made me leery about sleeping that night. The nurse had walked in while his food was leaking all over his stomach. He tried to get help by throwing the football at her. Suddenly bright lights came on like a spaceship landing on mars to inform me that Dean's feeding tube had been pulled out. I prepared for our trip and by 2 am the ambulance arrived. The sky cracked and thundered as raindrops fell on our cheeks while Dean being wide-eyed was loaded into the van. I was grateful to sit in the back with him. The doctors simply inserted a catheter as a temporary feeding tube back in the hole above his belly button. It is important to replace the tube quickly because the hole in the stomach will grow shut. While we waited for his x-ray to check the tube placement I tried to lay my head on his bed to rest. Dean held my hand and kept sharing sweet kisses as he pulled my hand to his lips. Since he was wide awake, I thought I try to play a game to help him pass time. I held his right hand to play "Thumb War." The first time I demonstrated the game by doing all the motions with his hand. Then I tried I again and he started to move his thumb properly according to the game. We played several times and he knew exactly what to do with his thumb, that is, "to win by pressing his thumb over my thumb." He is very competitive and when it seemed as though I were winning he cheated by doing a trigger pull with his index finger. I didn't tell or show him how to do this, he just remembered! We played Thumb War a few times when were dating and he always won. While we were at Kessler, the speech therapist tried this game but he didn't respond. It is exciting to see God breathe life back into Dean as his body heals. We arrived back to Quincy around 5 am and went to sleep 1/2 hour later. 

I requested for a day of rest since Dean hadn't slept all night and was exhausted. We stayed in bed for the day. The therapist came by to let me know that Dean had reached level 4 on the Ranchos Scale. Ten days ago, he was still at level 2 and another Acute Rehab turned us away because the requirement was a level 4. Everyone is amazed at the progress Dean is making as the miracles are unfolding. The Lord brought us to a retirement home to awaken Dean rather than an acute rehab. 

September 28 - Day 106

Dean was restless around 1:30 am due to the night before so I thought I'd take advantage of the opportunity. His mother asked me if I could get him to suck out of straw so he could drink a protein shake. I told her I would try so I put some Keifer in a 4 oz baby jar and cut a straw in half that bent at the top. I placed the straw in Dean's mouth and for the next 15 minutes coached him through the sucking process. I talked about drinking a soda, made a sucking sound to demonstrate, asked him to visualize himself sucking, and told him he could do it. I was determined as a wife who knows her husband's potential and God's promises. I figured if he won Thumb War last night he could win this battle too. Before long, he blew a bubble! I was thrilled as I've been told blowing is higher function than sucking. He kept trying and before long he was sucking the keifer through the straw and into his mouth. He found it rewarding as he finished the jar and heard  the empty sound after sucking it dry. He didn't aspirate which had been a huge concern. I thank the Lord for another miracle as I remember listening to a therapist telling me that he may not be able to chew, suck or swallow. Let's rejoice in what God has done, is doing, and continues to do in Dean's life! Thank you for praying! 

Later in the day, he stood at the standing table for a few minutes and received some electric stimulation on his legs. After therapy, I wheeled him next to the piano and played a few familiar tunes. I then placed his right hand on the keys to let him feel the keys and hear the music. He gently pushed on a few keys. Dean was refinishing a grand piano when I met him and I believe one day beautiful melodies will flow from his heart again. In the evening, I laid my head upon his chest to listen to his heartbeat and started to smell something sweet. Immediately I discovered that his tube feeding was leaking all over his stomach. I peeled open his binder to find that the inflated balloon on his catheter had two splits which caused the tube to slide right out of his stomach. This was a great disappointment because it required another hospital visit; however, it was the quickest visit we ever had.  They called the 911 around 6 pm and within 10 minutes we were on our way to Waynesboro Hospital. They wheeled Dean into the ER and I had to wait in line to complete paperwork. I wanted to be with him and it seemed like a long time of separation but by the time they printed out his wrist band and led back to see him the procedure was complete. We were back at Quincy by 7:30 pm and as we rode up the elevator I noticed Dean holding the straps across the stretcher. I placed his hand on the buckle and he unsnapped it. Pray this tube will last until his feeding tube can be removed completely.

September 29 - Day 107

Dean continues to lift his head when his pillow needs adjusted, brush his teeth, and shave his face with guidance. I am trying to establish a routine and get him more independent with his basic care. Over the past months, the aids quickly get him ready in the morning and it has always bothered me. I've longed to do the care myself and I've been grateful for the opportunity and privacy here at Quincy. It seems that he does better in a calm atmosphere as I take time with him to get ready and let him try. He has been washing his chest and face with a wash cloth and he pushes his arm through his shirt while lifting his head as I pull the shirt over. He understands that he is putting his shirt on but is limited because of his lack of mobility; however, he is putting forth much effort as I ask him  to lift his shoulders while I pull his shirt off in the evenings. He has been doing better at moving his legs when I put his pants and shoes on. I try to incorporate all his sensories into every activity. We talk about everything and I remind him that "this too shall pass" and one day he will be doing everything on his own again. Every morning seems to disappear before we are finally read to start the day and our breakfast quickly becomes lunch. He is doing great at eating small amounts of pureed foods and drinking from a straw.  We enjoyed the afternoon sunshine with family.

In the evening, I did some leg and arm exercises while he was stretched out in bed. He is doing better at keeping his legs balanced when they are bent at the knees. He also did twenty repetitions with a hand squeezer using his right hand for the first time. I gave him an adjustable wrench and he used his thumb and index finger to tighten and loosen the wrench several times. These are all familiar objects to Dean and it is exciting to see him maneuver these objects in the correct manner. I also gave him a bite of oreo cookie and a sip of fresh farm milk. Early in our friendship, I remember Dean offering me a glass of milk and oreo cookies as an evening snack. Later, my family came by and the children were excited to see Dean responding as he squeezed the hand squeezer as they said "Squeeze, Dean, Squeeze." 

We also want to thank Greencastle Church of the Brethren, all the volunteers for their kindness and the generosity of all those who came to the Spaghetti Dinner this evening. We are grateful for the sacrifices you all have made by sharing your time and resources with us in our weakest moments.

September 30 - Day 108

Today, we enjoyed the sunshine as we sat on the patio and had a picnic lunch with his family. Heidi, Lauren, and Devin played the piano and sang a few songs from our wedding. I noticed Dean a little tense with all the excitement and he seemed to relax a little more as everyone left. He can hear everything around him and I believe it is hard because he wants to communicate but is still unable to do so. There are moments when Dean moves his lips as though he wants to say something in conversation but only faint whispers come forth or no sound at all. In the evening, his sister, nephew and I were next to him on his bed and it seemed as though he whispered "I love you." He also gave his nephew, Daniel, a hug and patted him. He is showing more affection everyday.

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