Today was my third weekly meeting with Ted's case manager of the MVH rehab unit. The good news and bad news are the same. Ted will probably be discharged and come home in approximately 2 weeks. The GOOD part of that is Ted is walking fairly well ( still needs assistance - cane, walker, or person to lean on) and he is medically stable. The BAD part of that is Ted will need 24-hour supervision when he comes home - and they mean 24-hour supervision. He cannot be left alone even for a minute and no one can leave the room to do anything else, such as laundry, food preparation, etc. The concern is the brain flap - he still is missing the left part of his skull and it will need to be replaced. Any fall or knock to that area could cause permanent brain damage. He is not expected to have that part of his skull replaced for about a month or more. Right now his brain is still healing, and I am told that it is healing very well and very quickly.
I have jokingly said that Ted has passed from the vegetable state ( when he was in a coma for about a week), to pet state ( where we can walk him, toilet him, and get him to nod occasionally), and now to person state. Unfortunately, in the person state, he is cognitively about a 2-year-old. Accordingly, he does not understand risks, has not yet regained his reasoning ability, and can not differentiate symbols, letters, numbers, etc.
My assessment may sound harsh and callous, but folks, that is amazing progress. I heard him count from 1 to 10 today, with much prompting from the speech therapist. I heard him sing "Happy Birthday" poorly, but he got most of the words out. He said his name, Anne, and all of the children's names as well as Hoy. He cannot say Frayne yet and has much trouble with Christine. Those are harder sounds to make.
We all love 2-year-olds and Ted is still loveable. He has been 2 before and made it to and through puberty and beyond. We are expecting that journey from childhood through adolescence to adulthood to be much quicker this time, but it is a journey that must be made - fast or slow. I am entrusting to God that it will be fast.
He was very sad today. I was informed that is a sign of his cognitive ability increasing. When they become sad, they have awareness of what is going on with them and around them, so that awareness is a big indicator of progress. I tried to lighten it up. There were a couple of smiles, but he had several more classes today, and seemed very sad. I was told that he has had tears a couple of times over the last couple of days. I am told that is a sign of progress.
For those of you who desire to visit, that will not occur until some time after he returns home. He will still be having physical therapy, occupation therapy, and speech therapy several times each week in our home and that needs to take priority. When the time comes and you REALLY, REALLY want to visit him, you will need to call me and schedule a visit. I know that sounds cold and mechanical, but Ted's progress needs to stay on track, and chaos and confusion with visitors, therapists, etc. needs to be minimized.
If you haven't gleaned it from this post, I have now hit the point of feeling totally overwhelmed. Although I have taken care of three 2-year-olds, none of them had the size or strength of Ted and none of them had part of their head missing with the brain being exposed except for a flap of skin over it. It scares me to death....... Ted is still not swallowing and is still on a feeding tube, so Car and I need to learn how to feed him every four hours through his feeding tube. He has made progress in swallowing, but it is not there yet.
SO...... all of you out there who have been following the Ted Hoy blog, who have been quietly and consistenly supporting us, there is more for you to do...... KEEP THOSE PRAYERS GOING..... Right now, I think that I may need them more than Ted! In all honesty, I very much appreciate your support, your prayers, your caring. KEEP THOSE PRAYERS GOING..... Whenever I have made a call for prayerful support, you have all come through.
Since December 2, I have not broken down and cried. I have come close, but always got it together. Today, it may happen. I am not sure how I am going to be able to take care of him, even though I have Car and others to help me. I began to shake and tremble when it sunk in about the amount of work that needs to be done to take care of him at home and the amount of supervision that he requires. I can't put him in a playpen like I did Thomas, David, and Christine!
But, tears can be cleansing. And, he has made amazing progress. Please pray for that progress to continue, especially over the next couple of weeks. I am trusting that it is "the Spirit that quickeneth, the flesh profiteth nothing." In one word, GODSPEED. Thanks again to all of you who are supporting us, Anne
No comments:
Post a Comment