Ian is breathing a bit easier according to his respiratory therapist. They’re in the process of weaning him off of the ventilator, and he’s taking it well. They currently have him on the minimum level of treatment the ventilator can provide him. They expect him to be off of it completely by tomorrow. That would be great if he could get off of it completely. It would be great for us, too, if he could get completely off the ventilator, since we could put him into a nursing home in Indiana. There are no nursing homes near us who will take patients like Ian on a ventilator.
Please pray that he would get off the ventilator completely. Please continue to pray, most of all, that he would wake up. Remember to talk to him or read to him if you go to visit him. He needs the constant stimulation. Thank you for your kindness to us….
Today, Ian was moving his shoulder a lot as if he was trying to figure out how that arm thing worked. He got it a few times, too, lifting it in the air when we asked him. He moves his fingers and toes and squeezes Larissa’s hand. We’ve been noticing Ian moving a lot. The medical people remain suspicious, though, and from their experience it’s probably appropriate. There was a point today when it seemed really obvious to us that he was just worn out from all the activity. It was as though he just went back to sleep. He blinks pretty regularly normally, but when he was “asleep” he wasn’t even doing that.
Mary recorded our family, especially Lydia, on a small cassette player and then left the player and the tape in the room for us to play over and over again for him. It could be our imagination, but I think he really likes listening to it.
I’m praying that God would heal Ian, and, as a father, I don’t care whether it comes through a sudden miracle or if it’s through a gradual healing process. I just want my son well. So, I’m praying for a miracle, and I’m praying for smaller steps of healing. Please pray for a miracle. Pray with me, also, that Ian would respond to the medical staff on command and stop when they tell him to stop. Their acknowledgement that Ian is responding will significantly affect which rehab we can get him into. If he’s responding, we’re more likely to get him into a more aggressive program. Also, pray that the strength of Ian’s normal cough would grow. A good solid cough regularly would lead them to take the trach out.
Ian is moving whenever he’s “awake.” It seems every time I see him he’s moving more and more. The stimulation that he would get in a nursing would not ultimately help him to wake up, though. I’m convinced more and more that Ian is “in there,” but he needs the help of others. He needs the help of a facility like LifeCare. He would have to leave on Friday with only a three day stay (see Ben’s post below). Please pray that the insurance company would approve a longer stay.
It’s good to hear again about the progress other people see in Ian. We hear about and observe the small changes happening in him, but we’re seeing him every day or two. Because we see him so frequently the progress is often not as striking to us as it is for someone who hasn’t seen him in a while.
Ian’s Uncle Dan visited him yesterday and could see the change from a couple weeks ago. He said he looks right at you, he’s gained some weight, and he really seems to try to talk to you. That is quite a change from a couple weeks ago.
More and more Ian is using his voice. Mostly, he complains with it. When he’s moved around, when they’re getting him dressed, when he’s uncomfortable…he groans. The speech therapist heard him make a different kind of noise when she was with him. She said it was as if he was talking to her, but there were no words. Others have heard him do that, too. Josh Brown even thought he was laughing. “I still think about my friend in the hospital everyday,” he said, “and continue to pray for him. With every visit, though, I can see Ian’s steady progress and the true evidence that God is continually with Ian.”
He also had the opportunity to go outside a couple times in the last couple days. The breath of fresh air, I’m sure, is good for him.
Several people have asked about the standing “box” or standing “board” that the therapists have been using with Ian. It’s actually less of a box and more of a board that tilts and is on wheels. Imagine a 4’x8′ sheet of plywood that pivots like a see-saw and can be locked at any angle. The board has straps to hold him on it, and the whole contraption is on wheels.
The purpose of the board is to re-orient him to the upright position. He’s been in a prone position for the most part for over three months, and his body thinks that’s normal now. Getting him upright again will require a gradual re-education. During the few times he’s been in the standing box, he’s been at about a 75 degree angle. For those of you who weren’t math majors in college we all walk at a 90 degree angle, so he’s just a little tilted back. He doesn’t like being in it, though. The nursing staff were laughing, apparently, when they put him in his wheelchair from the standing board, because Ian let out a long heavy sigh as if to say, “finally, I’m out of that torture board.”
With all this activity in various therapy sessions, he’s often pretty worn out. In the past, we’ve wanted to provide as much stimulation for him as possible to wake him up. But, if you visit these days, don’t worry about trying to wake him up. If you visit and he’s asleep, let him sleep; he’s probably experienced plenty of stimulation during the day. The next day will likely bring just as much stimulation, so he needs to rest up.
We met with Ian’s therapy team today at The Children’s Institute, and despite his condition (still “a solid 3” out of a possible 8 on the coma scale) they set a goal for discharge of 8-10 weeks from today (1-26-7) assuming no unexpected setbacks in that time. Since all of his medical issues are slowly being addressed, they believe that the familiar surroundings of home and family would be a better context than isolation in an infectious disease room at the hospital. Their concern is that he could have a kind of “ICU psychosis,” an inexact term they used to describe a tendency they’ve noticed in patients like Ian isolated in an infectious disease room away from roommates and other stimuli that would be common in everyday life. They believe he might make more progress neurologically (i.e. waking up) at home.
Ian can’t go into his old room upstairs because of his injuries. To accomodate him, we believe at this point that the best choice would be to build an addition onto the back of our house with a design some have called a mother-in-law suite (a big bedroom and a big bathroom with an exterior entrance). We would then fill the room with all the familiar furnishings from his old room.
We saw some good signs when we visited Ian yesterday. He had a session with the speech therapist who taped little electrode things to his face; the electrode things were attached to wires which were attached to a little device that sends a mild current through his face. The device is designed to stimulate the muscles in his face. I guess it’s just a little uncomfortable having a device outside yourself control your muscles, so he turns away from the side that’s being stimulated. On this particular occasion, Ian had some facial expressions for the speech therapist (all expressions he did himself, not the machine) that looked like he was trying to say something like, “get this evil thing off my face!” Then, he actually reached for the wires or the electrodes on his face and was fumbling to get hold of them presumably to pull them off. He never actually succeeded, but he kept trying throughout the session. That was the first time we had seen him try anything like that.
The bad news from yesterday is that, while the sores in his mouth and nose are looking better, we think that the yeast infection has traveled to his throat. He seems to be reaching for his throat trying to scratch it. The speech therapist isn’t comfortable forging ahead with certain therapies with his mouth, nose and throat in that condition. Please continue to pray that the Lord would remove the yeast infection.
It’s going to be messy this time of year, but we continue to forge ahead with the plans to build an addition for Ian. This weekend I worked on a design for the addition and was in contact with a friend who agreed to help oversee the project. It will be about 20′ x 24′ and will include a large bedroom for all the special equipment he’ll need. It will also include a large handicap-accessible bathroom. The addition will be accessed from the ground level and will include a sidewalk from the front. We’re hoping to start next week weather permitting.
I’ve been meditating lately on the fact that God because of Christ’s death on the cross counts me worthy (though I’m not worthy in myself) to be one of his favored sons. All true Christians, those who have by faith trusted God to save them only because of what Christ did for them, are considered by God to be his favored children. I’ve found real comfort in the fact that Ian is a Christian; he trusts in God to save him only because of what Christ did for him. He’s one of God’s favored sons. That means that God’s power and God’s care and God’s compassion and mercy and kindness and provision (etc.) are directed to Ian. God cares for Ian more than I do, and God is capable of taking care of him. Ian is in the caring hands of the Almighty God. I’m so grateful.
Ian found his nose today and had a good time scratching it, as he continues to discover his face with his left hand. The botox seems to be helping his arms because they are more relaxed than before. I saw the inside of his left elbow for the first time since he’s been to Childrens.
His therapists are now trying to get him to kick a ball with his left leg. He definitely moves his foot, but he hasn’t gotten to a full leg movement yet. He’ll get there.
Last night when David started praying for Ian, Ian squeezed my hand really hard. He’s also been reaching for our hands more when we rest them on his chest or near his side. He’s definitely aware of us.
“No distrust made him waver concerning the promise of God, but he grew strong in his faith as he gave glory to God, fully convinced that God was able to do what he had promised.”
