New Pictures & How to Post a Comment

Hey everyone- be sure to check out the new pictures on the right. Uncle J really looks like he enjoys the tilt board! Also- I have heard word that there are a few people who would like to comment on posts, but aren't sure how. Below each post there is the word "comments" and a number- the number tells how many comments have been posted for that particular posting. To post your own comment, click on the word "comments". A new window should appear, here you should see any comments that have been left and also a see a text box that has "Leave your comments" at the top. Click in this text box and type your comment. Below the box, it says "Choose an identity", if you don't have a Google account, simply check the field for "Name/URL" and a field will appear for you to type your name. You can also check "Anonymous", but if you do, be sure to put your name with your comments in the "Leave your comment" section so that we can tell Uncle J who all has been stopping by and sending messages his way. When finished, click the orange "Publish your comments" bar at the bottom. I hope this is helpful, but if not- get in touch with me (any one of the family can give you my info) and I can see if I can help you through it. Thanks again for checking in!

A Quiet Day

Friday Jon was up on the tilt board again. He really enjoys it. Mom took pictures of him on it using her cell phone which Angelique will post tomorow. Saturday and Sunday were pretty relaxing. His room gets the morning sun and got pretty hot. Sunday around one o'clock, he was sweating alot. I was wiping off the sweat every 10-15 minutes. After an hour of wiping off the sweat, I went out and found the nurse. She took his temp and it was 99.1. Since Jon runs low to start with that is more like 100.1 to us. As the afternoon went on and the room cooled down, he stopped sweating. He did some breathing and arm exercises. All in all he was really quiet today. I asked him if he was okay, that he was really quiet and he said he was fine.

If the weather is nice this week, in the 70's and not so humid, I would like to take him outside for a while. The 80's are just too hot and it was humid. It is hard for me with asthma to breath when it's humid and I didn't want to chance it with his breathing. Then with his temp being up and sweating already, I didn't ask to take him out.

That's all for now. Thanks for checking in and keep up the prayers.

Look at me...I'm standing! Kinda...

I had a post all ready to go late last week in which I sounded really discouraged. Jon just didn’t seem to have any energy. He had been sweating a lot last week but not running a fever, that is one that is considered normal fever for others, but he’s usually a degree below normal. Many of the people coming in the room complained of it being on the cool side since we had turned on the air conditioning. During the week-end he started to run a higher temperature but not near the 101 degrees needed for treatment. They did run tests for urinary tract and bowel infections but everything came back negative. He’s needed a little more suctioning and I’m running my normal congestion “thingy” where I can never decide if I have a cold or it’s allergies kicking in. At this time of year it could well be allergies but we’re both complaining of a sore throat in the morning.

He’s been very excited with his new physical therapy regime. He’s strapped to a tilt board which allows him to be raised to a standing position. As you can imagine he is absolutely thrilled with the feeling of standing! He likes it to go as high as possible which the therapist said scares her when she's on it because she thinks she's going to fall over. Occupational therapy came in today to see how well he was feeding himself. She talked him into trying to eat his salad with a fork. Up to now we’ve encouraged him to eat things like mashed potatoes and meatloaf with a spoon which is a little easier to control and then we feed him his salad. Carol has been here this week and she has noticed that his bites are getting a little larger so he is developing more confidence in himself (Barb noticed his bites started getting bigger over last weekend but forgot to say something to anyone). They are ordering some kind of extension that will allow him to pick up a cup so he can get drinks for himself. It seems he drives the staff crazy with his constant requests for a drink of water. While Barb was there tonight she noticed that he is asking for more water than usual so tonight maybe more interesting than normal for night time staff.

The speech therapist has been spending a good half hour working with him on cognitive skills. She may have him make a new word of an old one by rearranging all the letters, making “ate” into “eat” for example. Repeating a series of words and listening to paragraphs and answering questions on the information given are some other exercises. Yesterday she managed to extend the session to 45 minutes and I think she’s going for at least that today. I’m using that time to type this post. (The therapist is really interesting. She is a traveling speech therapist and is hired on a 13 week basis and then goes on to a different job in a different town. This is her second move and she’s finding it hard to leave the new friends she has made.--I would, too.)

We’re still being frustrated in having to constantly remind the aides of the turnings but there are times when time gets away from us and then we notice it is well over 2 hours since the last turn. The wound doctor took him off the VAC because he didn’t like how the wound was progressing. We think it is getting bigger and don’t like the progress that silvadene and bactroban is making. It's harder to keep the dressing clean since it is not vacuum sealed. It had already been changed twice today and when Barb left tonight it had to be changed again due to the awkward place it is located.

I’ve made up a chart to remind me of all the different exercises he should be doing at various times throughout the day. It also helps to pass the time. We didn’t finish The Kite Runner and I started Holes but while he says he likes the sound of my voice it does a better job in putting him to sleep. The book cart came around today and he picked another western but I only got through a page and a half of the last western he thought he wanted to hear and he was asleep again--some excitement!!

His favorite past time when Carol is here is going through her list of his friend’s phone numbers and goes through it talking to as many who are home….and up and around. He really enjoys talking to his buddies and it lifts his spirits. It’s too bad he can’t manage the phone in his room yet. We’ve found a way to tuck our cell phone in his neck brace which allows us to be able to walk out of the room and let him talk to his heart’s content. The phone disconnects when the recipient hangs up so we don’t have to worry about being billed for dead air time. You can call home to get my cell phone number if you want to call him sometime. I’m here throughout the week and Barb and her dad are here a lot in the evenings and over the week-end.

We are getting somewhere in reducing the medications he is taking. They took him off a rather powerful one and I’m anxious to see how much difference, if any, it makes in his mood. I so long for some spark in his eyes and some hint of determination. This is the second set of staff that have asked who wants him to go to Dodd Hall more, Jon or us… so it’s not just us in sensing a lack of enthusiasm. Warmer weather is coming and we can get him outside. We’re hoping the change of scenery and the tilt board will get him rolling.

Thanks for checking in.

Vrooom Vroom

The occupational therapist (works on arms and hands) was as impressed as I hoped she would be with Jon's range of motion in his arms when she came yesterday. If he has his hand splints on, which come out about a half inch past his fingers, he can rub the side of his nose and his chin. When the physical therapist came in (works on legs and feet) Jon stretched out his arms and held them like he was holding onto the handlebars of his bike, "squeezed" his hands as best he could and went "vroom, vroom." We all got a big chuckle out of that. They helped him up to sit on the side of the bed so he could practice balancing himself. They showed him how to use the bed railing to help. He was able to sit for 10-12 minutes before getting tired. They want to get him downstairs so he can be put on the tilt board and get better exercise of his arms--there's just so few things you can do when you have bed supports in your way.

He continues to try to feed himself. He takes as many bites by himself as he can manage and then whoever is with him feeds him the rest. His appetite is better or his resistance is slacking off--whichever it is he's eating more. It's still not good but better.

These are things that staff doesn't see and don't realize what a big deal it is. Yesterday was the first meeting we've had with representatives of all the facets of services. Their big complaint was his lack of motivation and lack of sleep. We've always assumed a lot of his sleep problems with whatever facility we were in was because he has always preferred third shift and is somewhat a night owl. They have thought it was anxiousness and tried medicating him....When I checked with Jon about his sleep habits it turns out he never really slept more than 4 -5 hours at a time normally. So when I leave him at 9 and he's pretty sleepy then of course he's going to be awake about 2-3 in the morning and they don't know what to do with him!

Must run..I'm late getting off to the hospital.
Talk some more later.

Little Moments

On Saturday, Uncle Greg and I went to visit Uncle J at his new digs. It was the first time I had been there and I asked Uncle J if he had gotten to go for a walk at the facility yet, to which I got a smirk and an, "I can't exactly walk." I replied, "I know that dork, I meant in a wheelchair." He said, "No I haven't got to go for a 'walk' yet, dorkette." **smile** It made me laugh; it's just the little things...I hope it brings you a little smile too! G'night!

A Step in the Right Direction

Jon had a big "first" today. We've been practicing raising his arm and hand high enough that he can touch his ear lobes and today I put a spoon holder in Jon's hand and helped him with his first bite of food at supper. He took 3-4 more bites on his own with pretty good control of the spoon. Our informal occupational therapy is paying off! While he was sitting in a chair-his only activity for physical therapy- we tried stacking some blocks Carol had bought for him and he made a tower about 5 inches high! He also tried to write his name. He wanted to start to write in cursive but I suggested just printing. If he could have held the pen at the right angle it would have worked since the letter formation of his letters was right on. We are finally getting back to about where we were when we left Green Springs 2 months ago. The wound doctor is coming tomorrow and I'm anxious to see how the bed sore is progressing.

Hopefully we'll see more progress in the coming days...keep your fingers crossed!
Thanks for dropping by.

Aaaaaah!!! Real Food!!!

Jon got the green light for real food yesterday. His first meal was beef stew, diced pears and a garden salad which looked a little sad to me but he loves salad, especially drowned in ranch dressing, and ate every bite. Didn't really have to count bites after the first few bites of stew. He even went back to eating stew after he was through with his salad. Tonight he passed up a fish sandwich for a hot dog, french fries and cole slaw. I thought I'd try the fish sandwich since we didn't have to work a trade for the hot dog and frankly he made a good choice...fish was cold and while it looked like it had been in the fryer plenty long it didn't taste good.

He was up in a chair for a while yesterday. We'll try to work those times in a chair with mealtimes since he's supposed to be sitting up as straight as possible when eating. I had a chance to talk with speech therapy today to try to coordinate with physical therapy since they're the ones who are supposed to be in charge off putting on the turtle shell he has to wear when sitting up straight. We're theorizing that may be part of the problem Jon has with choking since I'm not that sure he's been at a high enough angle when eating in the past.

We're exercising Jon's arms quite a bit and he's been good about asking them to be stretched throughout the day if we haven't done it often enough. We almost have them to the point where's his arms are at shoulder height.

Jon had a nice surprise when his Uncle Bob and Diane from Baltimore stopped in to visit on their way to Dearborn to spend some time with my Mother. We had a good visit with them. Diane brought homemade chocolate Easter eggs which we'll be more than glad to help him eat!

Hope your Easter is meaningful and your company good. Most of us will be in Defiance this holiday. We spent all of Christmas with Jon--took all the Christmas presents and even the special silver angel napkin holders to dress up the table but just can't quite do the same this holiday. Carol has to work at 3 and Sunday evening will be Joe's first night back to work at Campbells.

Night,

Making Some Headway

It seems that the people at the top really want to deliver on their policies but just don't have the staff to carry it out. The day may start out well enough but then things come up...like physical therapy might be going on when its time to turn so they'll come back later but then they themselves get involved in something else and they don't. Bill wants to remind them on the dot of two hours and I try to give them a chance and wait 20-30 minutes and then it ends up being 3 hours between turnings.

I am much happier with the bathing here. It seemed rather helter skelter at the other place. Here he gets a real honest to goodness hosed down bath every Tuesday and Friday and sponge baths daily. (It was the real baths we missed at the other place and I'm sure that even though we spend a lot of time at these places it is possible to work in sponge baths when we aren't there--he once got one around midnight.)

The bedsore seems to be getting smaller--half a centimeter isn't much but its a step in the right direction!

I'm trying to get Jon to eat more and requiring a certain number of bites at a meal--doesn't matter which food and he can certainly eat more than the required number which he occasionally does. Tonight he had a pureed tuna sandwich that even I thought had too much dressing and vinegar, Italian wedding soup, pureed pumpkin with cool whip, and tomato juice. One bite tuna, the rest went to the soup!

He had another informal swallowing test after lunch. He ate most of a small dish of fruit cocktail and had no problems. Will go through another in the morning and maybe a real honest to goodness one with barium and if all goes well will get real food for supper.

I finally decided that we needed a schedule of things to do throughout the day instead of sleeping it away. So the last couple of days we've done exercises for breathing, swallowing, arm wrist and hand range of motion and leg and foot range of motion. Most of these things could be done several times a day and we were lucky to get them done once. I think I can see some improvement and if we keep it up we might start to see some real progress.

It seems that Jon really bugs the staff when we aren't there. He even told one nurse he just wanted to see if they really would come if he put on the call button. They decided he was suffering from anxiety so put him on yet another medication. I said that he had been driving me wild all day and that was why I left early so I could understand the temptation to solve the problem with a pill but there really ought to be a better solution. Tonight after napping a bit he asked me where a box was...I asked what box and he said the box with all his bones! Then said Oh, I must have been dreaming. As we were leaving tonight I asked his nurse to document any other off the wall comments as we have been trying to get medication reduced and he gave me a thumbs up...we'll see.

We're having a trying time getting the waivers set up for help with ramps and modifications to the house, a bed, etc. Seems that I made a goof when Jon was moved from Ft Wayne to Green Springs. Thank heavens for social workers who have knowledge of the system and can do the untangling!

Thanks for checking in.

Now that the weather is nicer we hope to see more visitors. Jon yearns to be closer to home but there aren't that many places in the state with this kind of program.

Adjusting

Moving always takes some time to adapt to our new surroundings and CRSI is no exception. During the interview they were adamant in their response to two hour turnings....”absolutely we turn every two hours!” We have yet to see that. Being the new kids on the block we’ve tried to be patient and yet insistent. We put the schedule for changing the foot and hand braces on the wall only to have the Director of Nursing tell us they couldn’t be there...privacy rights? I could have understood fire hazard! I asked how the staff would know since so many of them could be pulled from various other responsibilities and he said they read the charts every day. I responded that it was 10:10 and I had just removed the hand and foot braces and they were supposed to be removed at 8. He started taking notes. I said would you be the person to discuss turnings and he replied that he was so I told him of the 3 hour stretches the day before; he took more notes. Then he expressed some amazement about the IV port they were using in Jon’s wrist for his antibiotics. It seems that vancomycin is very hard on regular veins, which may explain why they were having trouble finding a good one a few days before, and that he needed to have a special PICC line in his upper arm. This required a move to the hospital next door yesterday. The PICC line (a peripherally inserted central catheter) is inserted in the upper arm and travels up to the shoulder and down toward the heart through increasingly larger veins until the tip rests in the distal superior vena cava near the heart. This allows the antibiotics to go into a larger body of blood and also get to the heart faster. Score: Director of Nursing, 1 pt. Us: after two days of very irregular turnings, 0..

We also had trouble with the call button. This is not new for Jon. He doesn’t seem to have the strength to hit even the soft round buttons hard enough and the only kind we’ve found that works is triangular shaped. After much tinkering they checked and by golly they have one of those!

By luck the VAC machine they use is stronger than the one at the other hospital. (The wound nurse there was not happy with the progress of the bedsore as it was getting larger and not forming as much granulation as it should.) However, the first one they used started beeping and they had trouble getting it to work properly so they needed a new one. I’m happy to say it arrived that same morning...so did another one about 7 that night!

I am pleased with the physical therapy team but then I just saw them briefly two days. Because of the trip for the PICC he missed therapy altogether Friday. He did, however, get a real bath. The first since he had been at Dodd Hall. They lay him on a plastic table which has a pattern of large silver dollar size holes and can use a sprayer to rinse him off. He got a good shampoo also. I’d like to see more of those since he has developed seborrhea in his hair, eyebrows, mustache and along the sides of his nose. Baths are supposed to be a regularly scheduled “activity.”

Barb,Bill and I have been “tag-teaming” at the hospital and keeping a log of turnings, instructions, and general events to keep each other informed. That has been a great help. There has been so much to remember though. The new bed doesn’t have degrees marked on it and he shouldn’t be below 30 degrees.. We try to guess but I think Jon has “the feel” of 30 degrees ingrained because he always let us know in the past when we had dipped below the 30 degree mark. Can’t be above a certain angle without his turtle shell brace...you get the picture.

Thanks for checking in. Was looking forward to an early bedtime in my own home and it’s late already.

Hope your holiday preparations are going well.

Marj

Packed Up and Moved Again!

Select Hospital told us last week they had gotten Jon off the respirator and that was their goal and so he needed to go to another facility...we thought the bedsore was another major issue but it seems that hospitals now have a "subacute" designation that evidently is one step above a nursing home and 2 steps below a regular hospital. (let me count the ways..regular hospital, long term acute care, long term subacute care and nursing home...)

Anyway, this place is very similar to Green Springs in that their major emphasis is on rehabilitation. He has a room mate again but like the last room mate he seems like a 60+ little guy. The last one was a Jordanian who ran a convenience store and was shot when the store was robbed. He had a bullet lodged somewhere in his back and they weren't sure they could remove it without causing other problems but we were glad to hear it was done successfully.

Oh yes? the name....Columbus Rehabilitation and Subacute Institute. Just send mail to sister Barb but if driving, and please do, come down Rt 315 to Broad and it's right across the street from the exit ramp. Can't get any easier than that. Moving days are extremely stressful for me. Several times now I have had to do most of the packing up and hauling it to the car. And then the ambulance never comes on time and the wait seems interminable.

I'm exhausted and off to bed. Please pray for more tolerance of pain on Jon's part and a renewed sense of wanting to "get the show on the road" to the best recovery possible. Thanks for checking in and again, my apologies for not attending to the blog.

PS For those of you keeping track of the bedsore it is now 6mm x 5mm x 2mm and although the wound guy said he saw new tissue growth he wasn't pleased with the progress either so maybe this new place will have a more powerful VAC or different methods to try.