Friday, January 30, 2009

All The Tests Paid Off!!!!!!

This is Barb, Jon's sister. I am having problems posting under my name. Anyway, Friday between 5:00 and 5:30 p.m. the halo was removed!!!! The joy of having it removed was soon replaced by pain of his neck adjusting to a new position. Jon said "Surely it was removed and surely I am feeling pain but it is from the false sense that the screws are still in my head. But I would not trade the pain now for still having the halo". Jon wanted me to show a picture before (with halo) and now (without halo). He now has a neck brace but no halo!! Hallelujah!

Thursday, January 29, 2009

The testing never ends!!

Once more Jon was trucked over to the main hospital for more CAT Scans on his neck. Still testing for his range of motion on his neck (they removed enough of the halo so that he could touch his chin to his chest and tilt his head backwards). There was a doctor in the lab that said things looked good but the final word would be given by the neurosurgeon. Carol asked about the thoracic area. "That part is not healing well and is all messed up". Apparently it is curved in areas that should be not be curved.
As a result of the testing, he missed all of his therapy today. He is tired and worn out from all the testing but his mood still seems to be pretty good. He ate 2 bite size Snickers bars and a piece of apple pie today so he apparently has his appetite for sweets back!! He typically eats only a bite or two of his meat however, today he ate 1/2 of the meat!
Dad was here in the morning until about 2pm. Mom, Carol and Barb came late morning and stayed until early evening.

Wednesday, January 28, 2009

What a Whirlwind!

More tests! It seems that Jon's halo is made of titanium so there is no problem doing an MRI afterall. Last night he was sent to have several MRI's of his head.If you've ever had an MRI you know what kind of noise they make--like a jackhammer out of control!! The last one I had I thought "I'll just take a nap.." yeah, sure! Anyway, Jon had a hard time laying still enough so they only could do one part of the test. He went down today after therapy and did the rest of it. They actually disconnected the halo from his chest brace to see how well everything in his upper spine was healing. We are looking forward to hearing the results later this week.

Carol has 3 days off this week and wanted to spend them with Jon so I met her in Findlay and brought her back down to Columbus.The snow was just getting started and we beat the freezing rain. When we left the hospital though the freezing rain had been at it for several hours so the 15 minute trip back to Barb's took more than half an hour. Today Columbus had at least 6 inches of snow--would have been more if they hadn't had so much freezing rain so it took awhile to shovel out a path and defrost the doors. We finally got here about 3:45 p.m. We'll be staying with sister Barb when we come down for visits. Barb and Jon's Dad are enjoying the opportunity to visit daily.

We've been trying very hard to keep Jon's fingers from curling but the physical therapist wants them to curl so that when he's leaning backwards on his arms he has more stability. He needs this position to help with transitioning from the transfer board to a wheelchair. We also were able to watch the occupational therapist make him a custom thumb brace. The therapy sessions have been interesting to watch. The therapist is working with him every minute of the half hour and seems to be tailoring his sessions toward specific goals. All his doctors, nurses and therapists had a team meeting meeting today to determine goals and a possible discharge date. Had Columbus not been under a Level 2 emergency status we might have made it over in time to sit in on the meeting.

Jon's attitude has changed dramatically. He is making great efforts to memorize names of the staff and greet them cheerfully...I must add that the whole atmosphere here is totally different. Jon has made more effort to try the food--we've suggested that it is a different set of cooks and menus so he's been willing to give them a try. One of the things he definitely likes is having real potatoes, not instant!

My apologies for the long times between postings. Between my computer being unreliable and the hour and a half trip home I've not always been capable of sitting down to write--one more reason to respect my friend's blog for her daughter. She'd be writing at one or two in the morning. (She also had her own laptop that went everywhere with her and is about half my age...)Last week I spent both Wednesday and Thursday night in Fremont...less than 24 hours notice on moving...the excuses could go on and on but the main point is I do apologize and I'm glad you're following Jon's progress.

Sunday, January 25, 2009

Dodd Hall has a New Resident!

Jon’s bone scan results came back Thursday afternoon with no indication that an infection had gone into the bone so his case manager called Dodd to see if he had the okay to be admitted. The answer: “If you can get him here before noon tomorrow we can admit him.” Mind you this was around 3:30 in the afternoon. She came to me and said if she could get an ambulance to take him around 9 the next morning would it be okay with Jon and me. We both said yes although I think we were both in shock at the suddenness of it all.

We set out at 9:35 and my first surprise was when they turned north. I thought we were going to take the bypass around Fremont and head south on Rt 53 but no--we turned east going through Clyde, Bellevue, all the way to Norwalk and then turned south to Ashland heading to I 71! All in all, what should have been a 2 hour trip at the most turned into an almost 3 hour trek.

Once here they really put him through the ropes. A 4 page inquisition, whoops, medical history and then 2 or 3 doctors all asking similar questions, poking here and there. They left and he was trying to get a nap and along came an x-ray machine and technician wanting a chest x-ray. I commented that he just had one yesterday and she went right on about her business--later it dawned on me that each place likes to have their own base line of information with their own equipment. Then supper came and half way through it 2 gals came with a gurney and announced he was going to get a CAT scan...now! at 6 o’clock or so… He was pretty much too tired to eat by the time he got back and only ate about a third of his chef salad and half a carton of milk.

Today he has had an evaluation by both the speech therapist and the occupational therapist. The physical therapist was in sometime during yesterday afternoon. Even though the therapists at Green Springs and I were disappointed in the amount of effort he gave and frustrated by the slow progress he was making the staff here seems pleased with what he can do. They are thinking of setting him up with a power wheelchair so he can drive himself where he needs to go. He is having trouble with their call buttons though. The call button at Green Springs was easy to use, the slightest tap sending a call for the nurse although the call wouldn't necessarily be acknowledged for some minutes. Dodd doesn't have one that sensitive. They tried every kind they had and he couldn't hit it hard enough to register. However, with their system a call is answered immediately by someone at the switchboard. In the meantime, they will have someone posted nearby to check on him regularly to see how he's doing. Jon has also had low blood pressure today and if they can't get more fluids in him they may start an IV. Nothing seems simple anymore.

It seems they weren’t through taking pictures yesterday. They needed an x ray of his spine and then several hours later they turned up with a gurney and hauled him off for a CAT scan of his spine! ..again at supper time. I went with him and we went through three separate clinics down through a tunnel, up to the second floor of another clinic and possibly another elevator and floor to the radiology department! This is only a slight exaggeration--and I do mean slight!

He has a phone by his bed that they will be teaching him how to use. My guess it will be best at least in the beginning for making calls out since it looks pretty much like a regular phone. He will have to use an adaptive hand piece with a pencil to dial and then he will be on speaker phone so no one has to stand there and hold the receiver. We will put the phone number with his other information as soon as we have it.

It’s a good thing we came on a Friday; he needs the rest and hopefully no one comes in on a Sunday to do more tests. The CAT scans and x-rays of his head and spine will be sent to a neurosurgeon on Monday so we should soon find out how the vertebrae are healing.

Thanks for tuning in and we’ll try to keep you posted more often. Keep those warm thoughts and prayers coming our way. We appreciate them.

P.S. Will change the address and list of phone tomorrow....

Saturday, January 24, 2009

O-H-I-O!

Well all, Jon is actually IN COLUMBUS! I don't know all too much as I was not there, but I wanted to let everyone know that he had moved. I got a call from my mom Thursday night that Uncle J's bone scan came back good and he was going to be moved to Dodd Hall at OSU Friday morning at 9:00. I talked with Grandma yesterday and they had arrived safely, though she said that Jon was exhausted, what with the long ambulance ride and then being poked and prodded for testing once he arrived. It sounds like he will have the rest of this weekend to recuperate and then begin his therapy Monday. More posts to follow and we will get his new hospital info up soon. Thanks again!

Wednesday, January 21, 2009

My Apologies!

I knew it had been a while since I had posted and had hoped Angelique would post Saturday after our visit with Jon. The cold weather has wreaked havoc with my computer at home--doesn't always want to receive or send due to ice and snow on the receiver.

There have been good days along with the discouraging ones. Jon's mental state is not always consistent. Sometimes we can work him out of his crabby state and sometimes not. He doesn't limit his arguments to just us, however, sometimes he argues with the doctor and more times than not, I hear, gives the nurses a rough time. (The doctor had to remind him during one interview that he, not Jon, was in charge...) He has finally just come out and said he's just plain depressed. I kinda think he feels deserted.

His eating is still poor although he scarfs down salads everyday...mostly iceberg lettuce and carrots so not much in the way of calories for all that effort. He has a chef salad almost every evening and usually polishes off everything--but the meat! Jello and peaches-combined or alone-are two other foods he readily eats. He has grown too used to fast foods in the past to recognize a good meal when he sees it but sometimes what looks good here is definitely not! Even his favorite foods that we bring in just don't seem to taste right.

He has one bedsore that is really causing some trouble and what looks to me like another one starting in the area where I would imagine the left pelvic bone is. While the larger one is getting better there is concern because it should be healing faster. Part of the slowness in healing is due to an inadequate supply of protein. Jon feels that it doesn't matter if he doesn't eat a good meal because they supplement with tube feedings. We've had to explain today that there just isn't enough protein in a can to do the trick. I really hoped that refried beans might be part of the solution but wouldn't you know, he doesn't like that! (I can't get the idea across that food is fuel not necessarily pleasure!)The situation might also have been different if he had some meat on his bones also!

Tomorrow morning he goes in for a 3 phase bone scan for the sore in the area of his tailbone. While they don't think it has gone that deep they want to make sure. If the results are good then there is a chance he can go to Dodd Hall in Columbus next week...how many weeks have I said that now?

Will try to do better-include in your prayers patience and strength for the rest of the family as well as for Jon.

Thanks.

Tuesday, January 13, 2009

Making Progress, Slowly but Surely

Carol and I had the opportunity to watch Jon at occupational therapy today. His task was to remove little blocks which were velcroed to squares on a "checkerboard" by their handles and hang them on rods. It was an excellent small motor exercise. He removed all 20 from the board hanging them carefully on rods and then discovered he was only half way through the exercise! He then had to remove them from the rods, one by one, and place them back on the board! It took 25 agonizing minutes-both for him and us but he completed the job! We were both very proud of him.

We have discovered how much he likes salads which he eats twice a day but lettuce and carrots don't exactly top the nutritional, or the caloric, scale. He does drink at least half of his milk and does well with fruit cocktail. We are still working on building up his confidence in his ability to feed himself.

He has had some problems with the muscles in his arm seemingly atrophying. At one point he could get his elbows back far enough that he could reach the pegs on the wheels of the wheelchair but now it hurts to even try to get his arms that far back. "Working through the pain" is not an expression that sits well on his ears!

The doctor was in at supper time for his daily rounds and told us that he would be getting a smaller trach--I had thought he was at the smallest one already but was mistaken. In a few days they will cap the trach during the day and he will be breathing through his mouth, and nose? During the night he will have the cap taken off so he will be breathing in the old, more familiar, way. The next step will be to remove the trach altogether.

The trach seems to be the last hurdle to being accepted to Dodd Hall in Columbus although the situation involving the mucous plugs was explained to them and it didn't seem as much a problem then. Dodd Hall has no available beds this week but probably will next week. They only do admissions on Wednesday and Thursday. The weather being as it is this week it probably is best to wait another week anyway.

Mental confusion and stubbornness seem to be the biggest problems for his family. We can't seem to get the concept of practice, practice, practice through to him--just working during the time allotted for physical therapy seems to satisfy him. (However, I was extremely pleased to see that he was using a combination of movements in the occupational exercise.) He has days when he "talks" motivated but it doesn't carry through.

Wednesday, January 7, 2009

Down in the Dump Days

Not a whole lot of good news to report lately. Jon had a terrific day on Saturday--good company, good conversation in general, first shower in 10 weeks--but as usual good days have been followed by down in the dump days and this week has been no exception. He continues to be extremely picky about eating as he has no appetite and complains about the physical therapy regimen. I can hardly wait till he’s in Dodd Hall with other spinal injury folk so he can’t complain about his injuries being special!

Along with specialized therapy for spinal cord injuries Dodd Hall also has specific programs for closed head injuries which can affect cognitive thinking, attitude, and physical capabilities--I think; group and individual therapy and “cheerleading”; and counseling for reconciling with what life has thrown their way.

Medically Jon has just one problem standing in the way...the spot on his lung that doesn’t seem to clear up with normal therapy. A pulmonologist will be looking at the CAT scans and chest x-rays tomorrow to decide if he wants to go down into the lung to see what is actually going on. Once that is taken care of he is cleared for the trip to Columbus, if accepted by Dodd Hall.

In physical therapy Jon is working on getting his thumbs hooked on the knobs of the wheels and moving his hands forward. His right arm does not move backward quite far enough for a comfortable reach yet. He may find himself literally going in circles! Today in occupational therapy he practiced using the adaptable spoon, which can be strapped to his hand, to scoop objects out of a container and place them on the lid of the container. This is a good exercise which will make eating by himself possible. Once he got items out of the container he had to use his thumb and forefinger to pick them up and place them back in the box. He can do 3/4 inch blocks fairly well but slim objects are much harder. This exercise takes a lot of concentration on his part...some of which I am not sure is hard work or just stubbornness. He still goes to the beginning point of pain and stops whatever activity he's involved in and we can't convince him to at least hold at that point for any number of seconds.

I was able to trim up his hair on the back of his head since he was sitting in his wheelchair when I arrived today. The top part of the chair which gives extra support to his halo had not been placed on the back of the chair so it was much easier to get at...also easier when he asked for his head to be scratched. He also noted that with shorter hair the head scratching felt "different."

He seems to be enjoying his new mattress which was delivered last night. He has developed another bedsore--makes 2 now--and his most frequent nurse is quite concerned. Thanks to her there is a more rigid following of the turning schedule which is supposed to be every 2 hours and no more than an hour in his chair at a time with the exception of the time he is in physical therapy.

Please continue to keep us in your prayers; both Jon and I can use all the positive support you send our way and many, many thanks for that.

Saturday, January 3, 2009

One Fine Day

Got to visit Uncle J today. It was most definitely the best visit I have had in a long time. I worked on his hands: soaked them in warm, soapy water, trimmed his nails, and worked on the excess skin and lotion build-up he had going on. He did really good with that. I also fed him his dinner. I am very gung-ho on the whole eating food thing and he hasn't been eating much. He did really well, eating almost half of everything! That was encouraging. Visitors today included: his mom and dad, siblings Barb and Greg, friends Greg and Jimmy, and me. We had a few laughs throughout the day and that was nice. They told us he was going to get his first shower tonight and he is excited about that. We are a little curious as to how it is going to work, but know after 2 1/2 months of sponge baths only, it will most likely be very good for him!

During conversation with Grandma and myself, he mentioned something about his truck. We told him that even with modifications (hand controls, etc.), if they could be made, we didn't think it would suit him. His eyes got really big and alarmed and he said, "You mean I'm not going to get my legs back?" Grandma told him they've said not, but that you never know what can happen. Then we told him more in depth about his injuries and the prognosis. He told me he was concerned about being a burden to us, and I told him to not even think like that, we are his family and would be there no matter what! Then I talked to him about some friends and family who are in similar situations and how well they have done. He acknowledged that and I think will definitely be looking forward to talking to them, sharing experiences, and receiving advice.

I do know that Grandma had a chance to show him the blog, read him comments, and show him who follows it. So keep checking in and posting comments, we will do our best to make sure he gets them. Thanks for checking in. We hope to continue with many more good posts!

P.S. My mom (Carol) just called me and told me that he did, in fact, enjoy his shower and that the nurse said he was very talkative. :)