Thursday August 11, 2005

Thursday August 11, 2005 When I arrived this morning Zack was in his chair at the nurses station chewing on a straw. He looked very much like the old Zack, slouching down with his legs sprawled out. I told him he looked too big for that chair and he said, “I’m not too big for this chair”. He had been throwing his baseball with Jennifer (day nurse) and when she asked him to be his glove on he said, “I had my glove on earlier”.
Jennifer told me that Zack had undone all the straps on his chair and when they weren’t looking he took a walk by himself. They found him a few minutes later on his bottom in the hall. They called Dr. Mook (physiatrist) to check him out and he was fine. They asked him if anything hurts and he said “no”. Now he has a new restraint that ties behind his wheelchair where he can’t reach it. This really upset him. They have weighed him again and he has gained a little weight (up to 137#). They increased his Bromocryptine to 10 ml. which should really help promote his talking. He is already saying a lot more
even though the Bromocryptine hasn’t had time to take effect. At 9:00 A.M. we are in his room, he is watching a tennis match on ESPN and I find time to check the postings. I was a little down on my way here this morning. Sometimes that happens when I’m driving and I have a lot of time to think. But God is so good. Just when I need it he sends me encouragement through all of you who post messages. I was in tears on the phone with Scott reading him the gentle words of God sent through compassionate Christians. You have no idea how meaningful your prayers and messages have become to our family. Zack received a great big card from the Freshman class at Oldham County High School, a group of kids that don’t even know him, encouraged by a mother who found us on this site. Sometimes we are blessed and allowed to see God’s plan unfolding in moments like these, recognizing that Zack’s choices and resulting situation is impacting many other teenagers. Again God whispers…wait till tomorrow.
They had a water-main break here this morning and the gym is flooded so Mary Beth (O.T.) and Amy (P.T.) come up to get us at 10:00. They have Zack walk up a flight of stairs to the 5th floor where we work in a conference room. He was very frustrated when he couldn’t write his name. They placed beanbags on the floor down the corridor and he had to squat to pick them up. This is the exercise that wore him out yesterday. At 11:00 we head to the Endo lab for his swallow video with Kathy (speech) and Dr. Schwab (Radiologist). They x-rayed Zack as he swallowed applesauce, fruit cocktail, a cracker and water. His swallow was slow at times, partly because he is tired from his P.T./O.T.
workout. He passes the swallow test and is put on a Dental Soft diet, which means he get to eat real food. Nothing chewy, crunchy or hard (so he can’t have pretzels, his favorite snack) and no straws (goes down to fast) or mixed consistency (cereal or vegetable soup). They have to count every calorie and that will determine when he can be removed from tube feedings. With the test over we go back up to his room to wait for his first lunch tray. It took them a little while to get to us and Zack got upset waiting, saying “they’re late”. Finally he got to eat mashed potatoes, green beans, grilled cheese sandwich and ice tea. He ate every bite except for the hard outer part of his sandwich. Although I helped, he fed himself, sometimes with the right hand. At 1:30 we are back in speech therapy with Kathy. Zack is very tired since he had no nap and was up most of the night. He got frustrated trying to identify items (like bananas, Coke, newspapers) but he was talking. He whispers and mumbles so you can’t always understand what he is saying. Our afternoon session of Physical and Occupational therapy got to be back in the gym (they got the water cleaned up). Mary Beth and Amy tape playing cards on the wall above his head and Zack had to reach up with his right hand to pull them off. He still has a lot of tone in his right arm and shoulder so he was very frustrated. He said, “I can’t” and “it hurts” and even got aggressive at pushing them away. He kept saying he wanted to get in his wheelchair. His brain is not sending messages to the muscles to contract and raise his right arm. They may have to E-stem (electrically stimulate) the muscles to get them to start contracting. They will continue to work on weight bearing which means on hands and knees (horsy). When we get back to his room he finally gets to take a nap. He gets dinner at 6:15 and again he has mashed potatoes and green beans (we're sticking to what is safe) and chicken. He used mostly his left hand and sometimes eats with his fingers but we are delighted because he is hungry and eating. Scott and Nick Snoddy (a friend from Christian Academy) take Zack for a walk after dinner. He stops to look in all the rooms and even does the “peace out” sign to another patient. Several of his friends come to visit and after a while Zack starts to get agitated so Scott asks them to leave. Actually Scott just wanted to spend time alone with Zack and watch the Packers game with him. He even ran me off so I could spend time with the girls and watch the end of Dylan’s football practice. We are so grateful that his friends still want to come to see him so just don’t get offended if sometimes your visits are cut short. I also want to take the time to thank everyone that has offered to help us. The Cheerleaders bought all our kids school supplies and delivered it in brightly decorated bags with candy. People are cutting our grass and Kim Getz (next door neighbor) is doing our laundry everyday. Aunt Penny and Uncle Jay took the kids shopping for backpacks and Dylan’s new middle school tie. My friends Donna and Teri are able to step in and take notes for me when I have to leave the hospital. My niece Sherry and her boyfriend Tim take care of this website. Everyone asks how they can help us and we are truly amazed at the Christ-like example they unselfishly display. I pray for those who are going through heartache that don’t have the Christian support that we have. God’s heart aches for them and he is using us to show those victims how trust in Christ will ease their suffering. To know that your cries pierce
even to the ears of God is a comfort that we long to tell them about. I thank you for the prayers that Zack would find midline again because it seems that God’s gentle hand is now always there directed his head forward. Now I ask for prayers for his right shoulder
so that he will be able to reach up without pain. As always, pray for complete recovery.