March 2007 - Posts
So Michael is still doing good. They say his pneumonia is fine, they aren't worried about it, but there is still fluid around his lungs. This isn't necessarily a bad thing either but they have to keep an eye on it, make sure it doesn't get too much, make sure it isn't infected. So far we're good. There is a possibility that his chest tube needs to b in a little different location so it can remove more fluid - but that isn't likely. The plan is to take the tube out today, then he could come home tomorrow but that plan might be changed. It could be that they'll move the tube to a little different location in which case they would take it out tomorrow and he could go home Saturday. Of course there is always the possibility that these possibilities are not possible. Welcome to Michael's world, all we know for sure is what is going on right now. Right now, he's comfortable, all vitals are good.
Therapists are taking the opportunity to help us get a plan helping his lower body. I think we'll come home with some more help in that area. With the Baclofen pump working we should be able to make progress that we couldn't before.
When this is all done, when we finally do get home, we will have accomplished the main goals. His baclofen pump seems to be at just the right level, we have a plan for getting his knee in better shape. Then we have a huge help with the Mercury. This is going to be awesome!! As usual the path we have taken is much more indirect that I expected but we are doing all we expected to do and more.
Thanks for you prayers and support!
Michael is doing well, (I say that a lot) at least now we know what is going on and the treatment for it is right. I am thankful and appreciative for the doctors and nurses that are working with him. In the past we’ve had some issues with University Hospital, whatever that might have been then, I don’t have any now – he is getting excellent care.
The care of people can be a pretty tough job. Most of us make mistakes once in awhile at work, then we have to fix them or maybe we don’t fix them. When someone in the patient care area makes a mistake there is often a lot more to do to fix it, family members, patients become an issue to deal with. I also imagine there are some family members that are issues to deal with even when mistakes aren’t made. As I think of it, teachers have some of the same types of things to deal with. So here’s to all of those who make earn their living caring for people and a special thanks to those who are helping my son!
He misses friends!
I hope to bring him home on Tuesday.
Got mostly good news today. Michael's oxygenation level is back to normal, he's had no fever for a couple days now, all seems great. But - yeah I have my but-face on - but the fluid around his lungs increased some after they drained it off so they want to put a tube in to drain it off and keep it off. I was really disappointed to hear this, I was really hoping he could come home tomorrow. Christine and I have both missed a lot of work this year, I hope and pray that my employer continues to be understanding and that I find time and ways to make this up. I was hoping we could both be back and have a normal week. So, Michael will be here for at least a couple more days. Well there is still a possibility that they won't put the tube in but they expect to find it necessary in the morning.
Michael is doing good this morning. They opted not to drain the fluid but instead gave him some medication to reduce it, hopefully that will be all he needs. They're going to test again this morning to see how it's doing. Can't wait to get him home!
Hey if you drop by to check on him here, leave him a comment and I'll read it to him.
Thanks for checking!
1 Jn 5:14-15
Michael has had another turn of events in the last couple days. He's now at University Hospital in Columbia, he has pneumonia and some fluid around his lung. This morning they are going to drain the fluid from around his lung, then check it for infection. He seems to be feeling better, his fever has dropped, he's resting - just watching tv. I'm hoping that he'll be coming home tomorrow or Saturday.
There is that great info that I've mentioned with the Dream Factory, I want to get to Michael and talk to him face to face / thumb to thumb before I post all the details.
Michael’s stay in Columbia will be a little longer than we expected, yesterday the doctors at Rusk released him to University Hospital for some tests. Michael's fever has continued off and on for the last week, they’ve done all kinds of tests to find out what the problem is but everything had turned up negative, or inconclusive. One of the doctors at Rusk said she would like him to go over to University Hospital, she said that they are much better equipped to find out exactly what’s going on and she is not comfortable simply prescribing antibiotics for a possible virus.
I’m always a little anxious about him going to a regular hospital, he is usually a little bit ignored in those situations.
Christine headed to Columbia last night to be with him, she called me this morning and said that he has a little pneumonia and they have started him on some antibiotics. Guess that’s why Rusk wanted him to go there – the doctors at University Hospital did figure it out and very quickly. I’m not sure how long he’ll be there but I’m anxious for him to come home now.
In the next day or so I’m going to post some information about the amazing The Dream Factory and what they are offering to do for Michael – stay tuned.
I have a huge thank you to give to The Dream Factory in Kansas City!! The Dream Factory has offered to purchase a communica
tion device for Michael. You might have read about this device, it’s called The Mercury from Assistive Technology. This is just amazing, awesome, wow news!!! There are some great organizations around that have helping others as their mission, The Dream Factory is one of them. Thank you, Thank you, Thank you!!! I believe this will be a huge help for Michael, it will be help for him right now and it will help him to progress, this is a great learning tool as well as a great communication tool. Awesome! Thank you again!
The Mercury is basically a Tablet PC built for communication assistance. Now I say “basically” because it is much more than that. This device has a much longer battery life than your normal notebook or tablet type pc, it’s much more durable as well. The Mercury has a mounting piece – kind of like a desk mounted picture frame - on the back of it that will allow Michael to set it on a tray in front of him, it is a full Windows XP pc so it can play cds, mp3, send email, do messenger etc. I’ll be able to send Michael messenger messages during the day – that will be cool. It has USB ports do I’ll have to see, maybe I can hook a camera up to it and we can have some fun with that also. Specifically for communicating, there is software on the device that will assist Michael in telling us how he feels, what he wants to do or listen to, what he’s thinking about etc. There are games and learning software also to help stimulate his thinking process. Addison can play games with him that will be great too. We’ve used a few things like this to help Michael communicate, you might have heard about the fun with Yes / No buttons, we used a board that gave him 9 choices to answer questions, Deborah has started a notebook that contains pages with options to fit the choices he might have. These have all been good for him but this, well this is a computer and a cool computer. If you know Michael you know that alone is something to perk his interest. J
It’s interesting how many times we’ve heard someone so impressed at what they see Michael do. Someone that only sees him from a distance might ask, “is Michael aware of you and his family? Does he know what’s going on around him?” But, when you’re around him for awhile it’s clear that he is completely aware and usually he’s very intently listening to everything that’s said. I hear people say things like “Michael is so “in there” it’s great to see him communicate that. He’s made us all laugh more than once when he has smiled at a comment someone makes. You may have heard the story of Addison and the cat. One day, a few people were over to see him, there is a small roar of conversation filling the room. I looked over and Michael caught my eye with a smile, I stopped and looked around to see what he might be smiling about, it was only then after I listened in closely that I heard Addison – from the top of the steps clearly out of the conversation of the room – say ‘Mom, the Cat is staring at me”. A couple minutes later – “Mom, make him quit! Brutus is staring at me”. I didn’t pick up on what she was saying till after Michael did, he thought it was pretty amusing.
So, again thank you so much to Kim and The Dream Factory! Thank you! Thanks also to Katie at Assistive Technology for all your help and for working with The Dream Factory. This is a dream that is only just beginning, I believe your help and provision will continue to increase Michael’s dream.
You're heard me refer to the AutoAmbulater, here is some info on it. 
http://ruskrehab.com/AutoAmbulator.pdf Unfortuneately Michael hasn't been able to get in this thing this time around. This is a pretty awesome machine! Mathew, Michael's roommate has been in the ambulator every day, today he stood up in the parellel bars. Awesome Mathew! Way to go!
Michael is doing great. He does have a fever, well he has it, then it goes away, then he has it again the next day. They've done a lot of tests to see what it might be and so far everything has come back inconclusive - so maybe he has a virus. I don't think this is anything serious but then we don't know for sure what the problem is.
He just got out of the Standing Frame, he was in it for about 25 minutes and was ready for more. He is slowly adjusting to the baclofen. As I've said before he has to learn to push through relaxed feeling. Just a couple minutes ago he lifted his elbow up, that's the first time he's done that since the pump has been working. His legs are relaxed - and straight, his arms are relaxed, he's not pulling to the right as he usually does. He's also been doing good at moving his head to the left- using his magic finger.
Right now it looks like Tuesday or Wednesday to come home.
Thanks for coming by and thanks for your prayers!
Well this is a great weekend for a spring drive! If you happen to be thinking of taking one, head down I-70 and say hi to Michael.
I just got off the phone with his Dr. at Rusk, they've found that he has a bladder infection, so he's going to be there through the weekend. I'm hoping he's feeling okay and I'm told that he's doing good, just uncomfortable. Maybe this will allow him to get some more therapy. I know he is in good hands at Rusk.
Thanks for checking in!
I got a call this morning from Rusk to tell me not to come get Michael – his doctor is concerned about a fever and wants to check him out before releasing him. So, now we’re set for tomorrow. Unless I get another call. I was told not to worry, he’s okay they just want to check some things. This isn’t bad, he’ll get another day of therapy. He hasn’t gotten to get in the Auto-ambulator so maybe he will get to do that today.
More good news! I got a call from Molly, most awesome therapist, she told me that someone is going to come tomorrow to test him out on a communication device and get him in line for getting a Mercury. This is really good news. At the same time, someone from a local organization called me yesterday wanting to do something for Michael and I suggested the Mercury to her. So, I’ll just let both go on their way for now, if one progresses faster then we’ll go with that one.
Along with that, I am getting reports that he is doing very well. Dr. Rupright is very pleased with the pump adjustment, therapist all say he is working hard and making progress.
Then I just got a call, letting me know that someone from the Rehab Institute here in KC wants to evaluate him for a day program. Good stuff!
This is quite a change, it’s nice to be putting cheerful stuff here.
Thanks for checking in!!
I don't know what day it is any more even my computer is confused.
Michael has a couple more days at Rusk, they’ve made a few adjustments on his pump in effort to get him just right. It was too high when I got their on Friday but the next adjustment got him a lot better. It’s a give and take, if it’s too low then he is tight and has to fight the tone, if it’s too high then he is sleepy, lethargic and unresponsive. I prefer a little tone over unresponsiveness.
Mathew, Michael’s roommate has a device called the Mercury, it’s basically a tablet pc with software for communicating. The device has a touch screen so Mathew can just point and drag pictures with his finger to say what he wants to say. The device also has some games and all kinds of things, it’s really cool!! I’m hoping Michael can get one of these, since this is a computer he is a little more interested in it than he has been in other “point to what you want to say” things we’ve used. Mathew’s mom brought it over for Michael to try out, she opened a trivia game which had a few history questions – “who was the first president” “who discovered electricity” – questions like that. The device displays the question and also reads it, then the possible answers pop up which are pictures and text. To get the right answer you just point and touch the display. Well, Michael got all the answers right, pretty cool!! This seems to be just right for him!
We’re still planning on going to get him on Wednesday evening, when he gets home he’ll be able to work more effectively without having to fight the tenseness. That will be a huge relief!
Thanks for stopping by!
Just talked to Everett and Denise, things are going well. His tone (spasticity or tenseness) is better. Molly said that he helped out but putting his foot on the floor when going from the bed to the wheelchair. I haven’t heard if he’s been in the Auto-ambulator yet.
Thanks for checking in!
Yesterday morning I got an email from Michael’s doctor stating that Blue Cross denied his stay at Rusk again. Grumble, grumble, grumble.
Then we hit the road, once again and headed for Columbia for his post-surgery checkup. Everything checked out ok. The Dr. who did the surgery is an Orthopedic Surgeon so I asked him about Michael’s knee and he gave some good information. Dr. Farid said to page him when we were done with the checkup appt and he would meet me somewhere to evaluate and adjust his Baclofen Pump. – How many doctors would do this?? - He adjusted the pump and set it to give Michael a bolus - a burst shot to see how it’s working.
Last night the Baclofen kicked in and it’s obvious that it’s working. Whew! This is a relief, a big relief. This morning I could still see a difference, Michael is more relaxed all over. It’s a nice relief for him and it will make therapy easier, hopefully it will make it much more productive. It will be different for Michael. When he is very tense, they call it “tone” or “spacticity”, when this is very high Michael can’t relax as you or I do so he has to guide the tone to do what he wants to do. If he wants to move his arm, instead of pushing or pulling it he has to direct the push and pull that is always there. When the Baclofen is working right he will have to do it completely different, he’ll have to learn to push through the relaxed feeling to do what he wants. The best way I can relate to this is thinking of times when my arm “falls asleep”. Not the, tingly feeling but that dead feeling where it feels very heavy, it takes a little push to be able to move it. From what I understand, this is what Michael has to work with – when the pump is working right.
Oh, I left something out… On the way back from Michael’s doctor called me and said that Blue Cross changed, they did approve a 7 day stay at Rusk. Yahhooooo!!! Thank you Lord! This should be very good for Michael, he’ll get some great therapy, he should get the pump adjusted – just right, hopefully we’ll have some direction and progress on his knee and I’m sure he’ll be able to get in the Auto-ambulator – the walking machine. I’ll try to get some pictures. The pain part is that I have another drive tomorrow morning to Columbia – on the road again. It’s well worth the return it brings for Michael!
I appreciate, as always, your love and support, especially your prayers.
Yesterday no nurse was available so I stayed home with Michael. It was a good day and I’m pretty sure that the Baclofen Pump is working. I got to see him working with his Leasa, his teacher –she is just awesome with him!! She had his hands laying on the laptray and asked him to slide each hand back and forth from the outside of the tray in to touch his stomach. He did this with both hands – this is Huge! He is getting more and more out of his left hand. A few months ago he couldn’t do anything with it. He works so hard on it, he puts his whole body into moving that hand. He also stretches it out completely now more often, he stretches his arm and fingers completely out. Leasa gave Michael homework, he was supposed to practice opening his mouth and pushing air through it.
Can you imagine this, imagine how frustrating it would be to have to work hard, to put your entire body into doing something as simple as breathing through your mouth?????
Well a lot of the time, Michael can’t do this, but he keeps trying. All last night when I reminded him of his homework, he tightened up, he tried hard, his whole body got tense, but he couldn’t do it. But, this morning I went in to hi to him, I was telling his nurse about yesterday. When I told her about his assignment, Michel opened his mouth and not only breathed out, he made a sound. Wow!!!!!!!!! This is big! He was proud of himself, he had a big smile on his face as if to say, see I can do that.
He keeps on!!! If you’ve been around here, then you know what got Michael in this condition. It would seem that he was ready, willing, wanting to quit – to give up. I can tell you with complete accuracy and confidence – This is not Michael now!!! There is no “give up” in him. On any given day he has to fight harder than most of us have to do in a month or more and a lot of the time it is for very little gain. I am very proud of Michael, of who he is and of his daily fight for life.