Progress continues

Again, my apologies for not keeping posts up to date. Jon's bedsores continue to improve. The biggest sore on his bottom is completely healed and the other is improving. It had a lot more tunneling and so it is taking long to heal. Still has the wound vac on it. Some days when I'm there it seems like hardly anything is moving through the tube. Yesterday, it was more visible. The dressing on his leg keeps getting smaller which means it is healing also. He goes to the wound doctor tomorrow so I should have a more complete report the next time I post.

He continues to be in bed all the time but yesterday was sitting up higher than before. The Center had said they would come after his chair but so far we seem to have missed connections. Talked with the nurse last night and she said she would see what the hold-up has been. Jon has permission to be in his chair for a couple of hours a day.

He had been getting some occupational therapy and they were working on being able to do more of the work in getting his shirt on. Had also been sitting on the side of the bed for ten minutes at a time balancing by himself. However, Jon had been switched from Medicaid to Medicare A and used all the sessions that were allowed so therapy was discontinued. The staff should be working to see if he can be switched to a different level of Medicare so they can resume.

Jon continues to be in fairly good spirits and there are no complaints from the staff which is good news. He is relying on the tube feeding and being picky about what he eats -- not good news! He can take phone calls and would really like to hear from people.

Thanks for checking in....

Progress--whooo hoo!

Noticed the date on the last post and have to apologize. I didn't realize it had been so long since I updated this blog.

The wound vac situation is not as dire because one of the wounds has healed enough that it doesn't need a vac which is very good news. He went to the wound doctor again two days ago and he was pleased with the progress so far. I had seen the one on the leg and thought it looked much bigger than the original measurements but evidently it is healing nicely also.

Evidently when Jon was at St Joe's in Fort Wayne early in March they were concerned about whether Jon might be diabetic. I knew that when he first came to Victory that his blood sugar was being monitored several times a day--in fact, it was checked 4 times a day and then down to 2 and now is at 1. However, while at St Joe's they must have given him a glucose test because he is getting two insulin shots a day.

My mother and sister, Margaret Anne, came down two Sundays ago to see Jon and Angelique and her beau, Jeff, brought me up the week before that. Carol tries to come with me on the weeks she has 3 days off in a row. The drive can be rather long -- not as long as to Columbus--but I'm usually there an hour and a half before turning around and coming home but I do make it up at least twice a week.

I've been disappointed in the occupational therapy, or lack thereof but Jon lets us work on his hands when we come. Thursday he said that a nurse worked on his feet, probably the first time in almost a month.

When I came up yesterday I was chatting away and he said very seriously, " Mom, they came in to wash my face today and they scrubbed so hard...so hard that all my hair came off." I hadn't noticed that he had had a shave and the beard was gone! It was getting scruffy...his words...I thought it had already gone to scruffy long ago so it was a wonder I hadn't noticed it right off the bat!

Carol had been talking to an aide who worked at a place in Napoleon and made a contact to see if they would accept Jon as a resident. It would be a 15-20 minute drive for us instead of an hour and 15 minutes. Unfortunately, they thought the wound on the leg and two wounds needing a vac was beyond them and turned him down...on the same day he was taken off one of them! We're thinking as long as good progress is being made where he is that we'll stay put and move him when things are looking even better. The fact that he is on zosyn, which is quite expensive, may also have been a factor in their saying no. I know it was when we were trying to come up to Defiance.

There has been a change of attitude...long periods in bed lend themselves to some thinking and he now says he "really blew it" while at Brookview. I think he's only thinking in terms of not following their advice with going to bed more often and staying there when it was advised and not his behavior in general, however, that would be an extremely welcome change of mind, also.

He would like company and now since the weather should be turning nicer you might think about taking a drive his way. The place is just 6-7 blocks away from I 75 and very easy to find.

Warmer weather is coming, warmer weather is coming, warmer weather is coming---suppose I should stay away from some of the rallies I've been attending?

Spring Can't Come Soon Enough

Went to see Jon on Saturday and found that the wound vac wasn't working. When Carol and I left on Wednesday we thought it was signaling that there was a leak. However, they said there was a part that needed to be replaced so he was only on the wound vac for about 36 hours. He was also having some problems with his digestive system that he had before when he was on tube feeding...we always said "liquid in, liquid out..." They're working on fixing that. I went to Toledo today and found that the wound vac still wasn't hooked up although when I left that was on their "to do" list for the day. They were changing the dressing on his calf and I asked if I could take a peek. It looks like it has increased at least one centimeter in both directions. Very red which I guess is a good sign of healthy tissue. Also just before leaving a pain management fellow came in to see how Jon's pain level was doing. I pointed out that one of the reasons he was wearing his hand splints all the time was because they didn't hurt so much with them on. It was decided that Jon's level of neurotin could be increased to see if that would help. Jon is still trying to keep a "stiff upper lip." He's not happy about being in bed all the time, I know but he's not complaining--at least not to me. I still have to bug him about keeping the blinds open so he's not in a "cave" and I was surprised that he didn't have the TV on. In fact he was complaining about the loud TV across the hall. Other than taking spells of wanting frequent drinks I've not heard any complaints from the staff.

It's almost April and I sure wish the weather was acting like it...although some place in the northeast they had another bout with snow and we haven't had that, thank goodness!

Geting Settled In

Stopped to see Jon twice this week. While I was there on Monday I taped a short video to show his Grandmother who has been very concerned about his progress-and my status. Since it hadn't rained like it was supposed to, I decided to take a quick run to Dearborn. Didn't let her know I was coming-just knocked on the door and there I was! The picture is small on a cell phone and the audio wasn't the greatest but at least she has some idea of his state of mind. Stopped back at Jon's on my way home for a few minutes and saw that his cousin Jonathon had been there. Unfortunately, Jon was either napping or had his eyes shut and Jonathon didn't wake him up. My Jon says if that ever happens with anyone else in the future--please wake him up! He doesn't get that much company and he appreciates each and every visit.

Carol and I stopped by after keeping me company at an anti-collective bargaining bill rally out on the shore of Lake Erie--we nearly froze to death! 38 degrees without factoring in the wind! I have bemoaned the condition of the Maumee River with the water that looks like a sandy liquid, but didn't realize the lake had started to look the same way! Lake looked as brown as can be.

Jon was visited by the occupational therapist on Monday while I was there. She doesn't like his splints so I imagine we'll have still another pair turning up soon. The therapist does an evaluation and works with him for 2 weeks and then turns the therapy over to restorative care. Then 3 months later another evaluation is made and the procedure repeated. Wish it had been like that at both the last two places although in all fairness to them he has been known to turn down therapy...

Hasn't had a swallow test yet. Jon says they're waiting until he can sit in a chair before they let him eat real food. Makes sense since an air bed or any of the specialized beds don't really let the patient get in a good upright position.

He does have a wound vac on the largest of the sores now. It was put on on Tuesday. Hopefully that will speed up progress although as deep and wide as it is it has a huge way to go!

His scalp and face are itching like crazy again. Can't get enough scratching and we can't do it hard enough so I'm checking out my list of previous medications he's had and will suggest they look into it.

The sun is shining and sky is blue...certainly hope someone has made sure his blinds are open today.

I'm so Lonesome, I Could Cry

Jon's is facing his first new move without much family around. While in Columbus Barb, his dad and I were there quite often. When he came to Defiance, he had his chair and was fortunate to know many of the staff, some of whom went to school with him and he had his friends who came around once in a while. Here in Toledo he's confined to his bed--his chair is still at my house, so he can't demand to get up--and he knows no one. He likes having his door closed which doesn't present an inviting atmosphere either. So at the moment he is going through a big dose of loneliness. I did notice today though that the blinds were open which is a plus...and the nurse informed me they like to keep the doors open although I don't know exactly how it keeps getting closed unless they don't have it open all the way.

I made a quick trip up today and spent more time with staff, signing papers, than I did with him. Seems as he is hitting the buzzer quite a bit asking for drinks. He evidently asked someone to put his Camelbac water bag on the dresser for some reason. I immediately had ice put in it and re-installed it on the side of the bed. Even had him do a couple of trial runs to reassure him that he can do it since he thought his hands splints were in the way.

I'm surprised by the splints...I've never seen him wear them as often as he has been the last few weeks. He has several sets and decided he didn't like the ones he was wearing so Greg found a different set in the garage for me to take to him. I'm not at all sure they were the ones he wanted though. I offered to put them on him but he asked to put them on the shelf...he gets to take them off in the afternoon so he'll probably change then.

While there I signed papers for him to have a wound vac on the largest bedsore. I also noticed that he was on his side. The last time I saw him he was flat on his back. The room was a little on the warm side and I was somewhat concerned when I saw how much he was sweating. I pointed out that fact to the nurse and suggested that she might check his blood pressure to see if he was going through autonomic dysreflexia.

I had to leave before either the wound vac was "installed" or before a blood pressure check was made. On the way home I received a return call from St. Joe's concerning Jon's eating order. The nurse reassured me it was okay for Jon to eat and I suggested that the new place probably wouldn't take my word for it and would she call and let them know. She said she would so hopefully he had supper. First, they have to find his divided plate and silveware, though.

You can tell Spring has come; not only is the weather warmer, the road crews filling potholes and the surveyors are out in full force, slowing traffic down!

Have a good weekend.

The Week that Was

To catch up on the last post. Jon does have pneumonia but they decided against a bronchostomy evidently, because no mention of one being done was in his chart. His largest bedsore is down to the bone and actually the bone is infected. Another case of osteomylitis! Had one while in Columbus late in '09. While in Ft. Wayne Brookview would not take him back due to his behavior--coming in late, smoking more often than allowed, not following doctor's orders, etc. His ombudsman, Cretia, filed an appeal and a hearing was set for a week ago Monday. With 30 pages of notes on his behavior it didn't look well. The social worker at St. Joe's is not familiar with facilities in Ohio so it was pretty much up to me. I've been fighting a cold and Senate Bill 5 which does away with collective bargaining for teachers, firemen, policemen and all other public workers so my time and energy have been divided.

This week has been crazy. Angelique, Jeff, Greg and I went to Ft. Wayne on Sunday and I checked with the nurse to see if there was any sign that he would be discharged yet. She checked and couldn't find anything but did say they were trying to get his blood pressure stabilized. However, On Tuesday, I received a call from Cretia saying our appeal had been denied. It was quickly followed by a call from the social worker in Ft. Wayne saying they were discharging Jon that day and sending him to the facility in Toledo we weren't crazy about. I tried to say we didn't want him there but it was to no avail. I called back with several names of places she could try but about noon she said it was too late, he had already been discharged and "was out the door as we speak."

"Well, out the door as we speak" is the infamous quote of the week! Tuesday's plans were for Carol and I to go to Toledo to check out a place that Brookview here in Defiance had said would take him. We were far from thrilled when we read their inspection reports for the last 7 times so we decided to go see Jon. Since the call with the social worker was around 12:30 we thought if we got there by 4:30 he probably would be settled in by the time we got there. We found the place, went to the reception desk and they never heard of a Jon Castanien, they checked the lock-down area where he would be and they had no word of him either. We called the hospital and he hadn't left yet! We went back across town to get a new mouth-piece for his Camelback water bag he uses to get drinks and stopped to eat. We still had an hour to kill so we decided to visit his Uncle Raleigh and cousin Eric. We joined them at Bob Evans and had a nice chat. Another call to the new place, Liberty Nursing Home, and he still wasn't there. Called back to the hospital and asked for the address. Seems they sent him to a sister facility several streets from the place we had stopped at. When we called them around 9 he had just arrived. Since we were both beat we decided to go back home.

Greg and I went to see Jon yesterday. This place is older but looked okay...and its inspection ratings, while not great, were at least better than the other one. We visited a while and Jon said he couldn't eat yet. Actually he said he couldn't swallow. I checked with the nurse and she said he needed a swallow test with the speech therapist and that probably it would be done tomorrow (which is actually today.) I reassured Jon that I was sure he could swallow--Sunday he ate a huge sandwich according to Angelique--and did he want to try a few swallowing exercises? We did some together including the silly repeating of the syllable, hee hee hee! in a voice as high as possible. Carol called today and they said the reason he needed the test was because Ft. Wayne did not include eating in their orders and since he came with a feeding tube they assumed he didn't eat.

In general, Jon was extremely quiet, didn't want the blinds open and had the door shut all day. The TV was on (NCIS of course) but his bed wasn't positioned well to see it. I regret not asking if we could move it to an angle--or at least turn on the TV in the other part of the room. He has no room mate. Jon stopped doing exercises with his neck when his original physical therapist left at Westerville and I'm not sure he can turn his head much at all.

That's all for now. I've probably left out some but you've got the gist of it. Have had trouble getting into this blog but think I've gotten things straight in my head now.

Looking forward to Spring as I'm sure most of you are, too!

(Jon's on complete bed rest and his chair is in my living room so he won't get getting about too much for a while.)

Back one more step

This is Barb. Dad and I went to Ft. Wayne today and visited Jon at St. Josephs. We were there for about 2 hours.

The visiting hours are restricted from 6:30 to 8:00 both am and pm for distribution of medications.

Jon was in a good mood and pleased to see us. He sang me "Happy Birthday" when he saw me. While we were there the Respiratory Therapist came in and gave him a breathing treatment. She said all looked pretty good. Dad went down to eat and I fed Jon his lunch. He was eating well.However, about a half hour later, the nurse came in and said that due to having to increase the amount of oxygen they have been giving him in order for his oxygen level to remain above 95, they were going to do a chest xray and a blood draw. The blood draw would be to check for blood gas levels (the actual amount of oxygen in the blood) and to check his potassium levels. They are giving him antibiotics and potassium in his IV. When she said they were doing a blood gas draw and a chest xray, I looked at Jon and said "To see if you have pneumonia". The nurse turned to me and asked "Are you a nurse?" I said "No. I've just been with him from the beginning. He used to get pneumonia alot". She said "Oh, I thought maybe you were the one." Jon looked at her and said "No. That's my niece. She's studying to be a nurse". I looked at Jon and said "No. Angelique's not going to be a nurse." He looked at me and said "No. Joey's wife or girlfriend, going to be wife, Jenny". I said "Yes, she is studying to be a nurse. She's almost done with her studies." The results of the chest xray came back as we were leaving. She said "The xrays showed fluid in the right lung and we are going to put a percussion vest on you four times a day. Have you ever had one before?" Jon just looked blank. I said "Yes. You had one right after the accident to get your lungs clear". He said "I don't remember". After we left, Mom sent me a text. They found a dark spot on the xray and are concerned that it is food. He used to aspirate when he started eating solid food but it has been quite a while since he aspirated. They are doing a bronchioscopy tonight.

We will keep you updated as information becomes available. Please pray for Jon and his lungs.

Many blessings, Barb

Back to Square Two

Jon has 3 pressure sores. We don't know how big they were before the surgery but after they were cleaned out, they are:

Right backside 12.5cm long (5 inches), 9 cm wide (3 1/2 inches) by 5cm (2 inches)deep.
Left backside 6.5 cm (2 5/8 inches)long, 3 cm (1 3/16 inches) wide by 4 cm (1 5/8inch) deep.
Right calf (not front afterall) 6 cm (2 1/2 inches) long, 5 cm (2 inches) wide by 2 cm (3/4 inch) deep.

The hospital considers him malnourished due to not eating breakfast and other proper meals. Therefore, he is being fed by a tube in his stomach. He was not getting the proper nutrition for the wounds to heal correctly. He is also on antibiotics for the wounds. They put the PIC line back in his arm.

He will be at St. Joseph's Hospital in Ft. Wayne for at least a few weeks in order to get the wounds healing correctly. The address is: 700 Broadway Burn Unit Room 9 Ft. Wayne IN 46802 Visiting hours start at 6:30 am. Visitors should not be contagious, if in doubt, ask for a mask since he is in the burn unit.

We don't know what level of care he will need when he gets out. He may need a higher level facility than Brookview. This is a giant step backwards. He went through so many levels of care in Columbus and finally had him at the lowest level. Our stomachs are still doing flippy flops. We don't think Jon fully understands the seriousness of his condition.

More snow... Bah hum bug!!

Will keep you posted, not on the snow but on Jon.

Jon has a new pressure sore on the front of his leg. He still has one on his backside as well. He apparently has been going to Ft. Wayne monthly to have the one on his backside looked at & if necessary debried. I knew he had been once before but did not know about this trip. He told Greg. He is in the burn unit as that is a unit that takes care of bedsores in many hospitals. Will keep you updated as more information becomes available.

New Developments

First of all I must apologize. Jon had become quite obstinate about sharing information with me. He didn't want the nurses telling me of any infections he had, trips to the E.R., what time he came in at night, what comments he made to the nurses, etc. Sometime in November I discovered he had a bedsore but he could never quite remember its size. When he joined us for Thanksgiving he had a wound vac. It apparently did its job nicely because around Christmas they removed it. He went to Fort Wayne to discuss the possibility of having a skin flap procedure where they cover it with some fatty tissue and then pull flesh around it to cover it. However, today he reported that he had another one developing on the other side of his rear and now is being turned almost every hour at night.

Greg came home one day in December and said that Jon was driving down the hallway and suddenly stopped and just stared for a little bit. He snapped out of it and said he had just fallen asleep. There have been several more occasions like this and one more serious that had him sent to the hospital for tests which included an MRI. Today, his nurse called to tell me that he had had yet another incident. He was unresponsive, eyes closed and his skin was pale and ashen. She couldn't rouse him until she rubbed his chest but then he fell back to being unresponsive again. Again, she massaged his chest and he came around and talked a little with her. She told him she wanted to check his blood pressure and he seemed to have lost his orientation and wasn't sure of the way to his room. His blood pressure was 82/62. I went over to the hospital and he said they had already done a ekg and it seemed ok. They ended up taking two different blood draws and two urine samples. His urinary tract infection seems to have cleared up as that sample was ok. The blood samples showed a potassium deficiency with a reading of .9 (lowest normal is 3.5 ) After 3 long hours everything else seemed ok. They gave him a "potassium cocktail" - my terminology, not theirs - which contained 5 dissolved capsules of potassium! and he was free to go.

Upon returning home I checked low potassium and one of the symptoms is fainting. When Greg told me of the first occasions my first thought was petite mal seizures, especially since Greg said his eyes were open. Perhaps they were minor fainting spells but maybe those were unrelated to today's issue.

To bring you up to date on other activities we hosted the Slawson Thanksgiving dinner at my church which made it much easier for us since there were 26 in attendance. Christmas we had at our house. We had 13 people for dinner which made for a full house-especially with Jon's oversized chair. A good time was had on both occasions. We celebrated Joe's 27th birthday in November at the house and Greg's at Brookview. Joe is currently awaiting the arrival of little Liam, who can come any time now.

At a Crossroads

We are definitely in some kind of a quagmire here in Defiance. First, we had Jon wanting desperately to move out on his own and the doctor saying it was okay. With the home waiver program Jon could only get 14 hours of skilled help a week and as many of you can guess he needs close to that in a day. Jon is sure he can get any number of aides to volunteer some time when they leave work to get him out or into bed and he feels any number of friends would be willing to come help out in any other way whenever needed.

Somehow either we were wrong about the doctor's signing off or he changed his mind because now the doctor's saying Jon needs 24 hour care, i.e. a nursing home. If Jon moves out on his own now it would be against doctor's advice and he would not be eligible for any aides through the home waiver program. Jon is quite determined to be on his own where he can come and go at will. How that will sit with volunteers coming at specified times is quite beyond me. One of the other major problems is having enough money for deposits on rent and utilities so he has been seeking agencies which will help him.

If he had any plans for doing something constructive with his life the family would be more willing to help him through this. As it is, he seems preoccupied with gadding about town, putting himself in danger in the middle of the night; smoking, which is not recommended for a guy with diminished lung capacity; and running a tab at a local bar.

We are beyond disappointment, way beyond.

A Reprieve of Sorts

Jon has recovered well from his bout of pneumonia. He occasionally coughs and get get up to 1500 on the spirometer- a gadget that measures lung capacity. It can measure up to 2500 but I don't think he has even come close to that.

As a result of police being called to help Jon when he passed out a week ago Jon was cited on two counts: open container and possession. He went to court today and as I gather from the judge's conversation with Jon the police were called as a medical emergency not a traffic violation. Due to a couple of other reasons that I'm not sure I have straight the charges were dropped and only court costs were assessed.

Jon has been busy scouting around for a new place to live. We have checked two places and I think maneuverability of his chair is going to be a big factor. Places with lower rent also seem to be older and have narrower hallways.

During his talk with Brookview last week he adamantly refused drug and alcohol counseling or any other counseling that make him a little easier to deal with. If he has always been a "my way or the highway" kind of guy then either he wasn't around family enough for us to find it as annoying as we do now or he has gotten much worse. He's also bugging me about a van so he can drive again--we won't even go there!

Thanks for checking in.

The Axe has Fallen

Jon came back to Brookview yesterday afternoon. He is still coughing quite a bit but in general feels much better physically. Brookview scheduled a patient care meeting for later in the afternoon and the news was much as I have feared the last few weeks. Jon has continued to come in late and since he doesn’t sign out or in--or have an aide do that in his presence--it cannot be established as to the actual times he comes and goes and whether or not he has been gettingin earlier. Jon threw another monkey wrench into the works when he was carrying around an empty beer bottle when he passed out from his coughing spell. We have since found that the official blood alcohol reading was .03 which is relatively low.

In essence he is “grounded” since he cannot leave the facility without a member of the staff or his mother. He has a 30 day notice and must find another place to live. While it doesn’t surprise me it means a good deal of scrambling to come up with acceptable housing since he is adamant about not living in another facility. This may be a quite difficult feat to accomplish, considering many of the programs that might be of assistance require that he be homebound and unable to get out and about except for doctor’s appointments and such. Both the Social Security Office and Jobs and Family Services were closed today so making appointments to get info and help from them will have to wait until Monday.

Brookview just called as I was refining this post to say that Jon does have pneumonia and will be receiving zosyn intravenously every 6 hours.

Your continued support and prayers are appreciated. Thanks for checking in!
 

And We're Off to St. Vincent's in Toledo

I got a call this evening from Brookview about 6:15 with the news that Jon had been taken to the emergency room at Mercy Hospital here in Defiance. Seems he had passed out and was unresponsive. Someone had called the police who called the emergency squad. They had to "bag" him--give him a hefty dose of oxygen--to get him to come around. By the time I got to the hospital they had already done a chest x-ray which came back clear and a blood alcohol test which had a zero score...thank goodness! Shortly after I arrived they did a quick EKG test. I was doing something for him-can't remember what and she was done and had all the "spots" off before I knew she had even started a reading! Didn't hear anything back on that test and I think probably it was okay.

They did another round of blood draws--3 vials divided among 6 bottles with each vial taken from a different part of his body. These were to determine if he has any kind of bacterial infection but the cultures take from 48 to 72 hours to "breed and read." (My terminology-not theirs!) They did start him on a course of antibiotics through an IV -rocephin. The phlegm that he had been coughing up was, in the current vernacular, "nasty looking" so something is going on for certain. There was one time when it contained what looked like an anemic square of tomato and he said he had eaten mexican for supper so it may be that he had aspirated and didn't realize it or thought he had it all coughed up. He had an oxygen mask on and I had a hard time understanding him.

I had thought to bring my health power of attorney papers but not his medicaid card so I headed home for that and his glasses which were still at the fire station. Before I left he asked me to empty his foley bag but the nurses had already done that. I was a little concerned that in 2 hours he only had about 25 ccs. When I came back in less than an hour it was up to 75 ccs so I was feeling a little better.

Jon's regular doctor is on vacation, of course, and the doctor covering for him was concerned that if Jon took a turn for the worse and needed more intensive treatment neither of the 2 hospitals here would be able to take care of him...so at 10:10 he was loaded into an ambulance and taken to St. Vincent Medical Center in Toledo which does have an ICU. Just before leaving he had a second breathing treatment which should have broken things up more.

Hmmm, forgot something and don't know where to insert it so here it is...it seems that he had a coughing spell on the way home from a buddy's and he leaned way forward to cough better but he couldn't get himself back up to a regular sitting position. This does something for a normal person's ability to breathe and certainly is not good for Jon and that's why he had passed out and was unresponsive when the paramedics arrived. He's missing his tank top so I'm guessing it got cut off--hope it wasn't his birthday shirt I just got him!

Thanks for checking in--the long spells between posts are mostly due to the fact that healthwise he's been doing so well. I've been bragging that he's not had anything major since the second week in January. i get discouraged with his other shenanigans and you probably don't need to hear about all of them anyway. I rented a van last week-end and took him to Columbus for his father's surprise 80th birthday party and he seemed to have a good time.

Thanks for checking in. He shouldn't be there more then 3 days or so but St. Vincent Medical Center's address is 2213 Cherry Street, Toledo, OH 43608-2801. Will keepyou posted.

It's a Start...

Just saw the newly installed lighting system on Jon's chair today and must say it is impressive; lights under the front of the arms, under the foot rest so he can see the street, and flashers. He definitely will be more easily seen. I'm still concerned about the condition of the roads he chooses and the traffic on some of them but then, I'm a mom and mom's worry.

Anybody for a Game of Jeopardy?

Jon had his second appointment with his rehab doctor. We took the dinky list of equipment the physical therapy lab has at Brookview but the doctor seemed to have forgotten that they had suggested coming to Toledo for a couple of weeks of therapy. When I mentioned that he checked Jon's triceps and again found that he has fairly well developed triceps on the left side but is woefully lacking on the right side. . . and the idea seemed to be dropped since again, Jon spent a lot of time talking about an operation at some time in the future. It seems a nurse who goes to the same church he's been attending works at Parkview where he was originally taken a year and a half ago. She told him some neurosurgeons there have been reattaching the spinal cord but he didn't catch their names, or the kind of operation, and the Toledo docs don't seem to keep up on that aspect of treatment--just rehab. Anyway, we came back home with an appointment in the future and no exercises for the hands or the arms. We were both disappointed. Meanwhile, I checked out a fitness center co-sponsored by Defiance College and the local Y. They seemed to think that they had some equipment that would be beneficial and he could work pretty much on his own. There is a trainer available for an extra fee which seemed fairly reasonable to me. Jon assured me he would check it out--sometime.

The rest of us are not too happy with Jon although he seems happy as a lark. He's out everyday by 2 o'clock and getting quite a tan. It seems there's not a friend in town that he can't manage to get to although he's been having some troubles with his battery necessitating someone pushing him up the Northside hill which is pretty steep--cyclists are more apt to walk their bikes than try to peddle up it. He's also gotten hung up on some railroad tracks. Even though they are seldom used it seems like some pretty scary stuff to me, even in the daytime, but these have happened at night. He assures me that the city has put some stone and tar at the crossing making it smoother so he shouldn't get stuck again. He also has taken to coming in rather late at night--Greg took the 2 a.m. call and went out looking for him and I missed a call at 12:30 on my cell phone. Without my hearing aids I can't hear my cell phone even though I keep it about 15 inches from my head!

We went to Walmart today and spent a considerable amount to buy lights, battery and charger, wire, reflectors, etc. which a buddy will use to make his chair more night-worthy. Someone reported that the police had stopped him because he was almost hit by a car but I don't know if this was a daytime incident or night time....I don't always ask for all the particulars! Friends and acquaintances fill us in on events they think we should know about even if there's very little we can do about it. Not sure how to ground a 44 year old man although the thought occurs to me that Brookview could refuse to get him out of bed--mostly I'm being facetious, but then again.....

He's also taken up all his old habits of drinking and smoking which doesn't earn him any Brownie points with us either. His reasoning is that it wasn't his choice to stop and he wants to see if "he can stop on his own." If anyone knows how to successfully explain "addiction" to him we would all be grateful. Our biggest fear is that if, at some point, an operation of some kind is feasible that his lungs would not be up to being exposed to anesthesia for the time period such an operation would require.

My apologies if I sound down and out...it is because I am. All of us put in a lot of time and effort in helping him to recover and we hate to see him seemingly throw it all away. His list of friends who he'll listen to seems to be getting shorter and not all of them are on the same page we are. Unfortunately, Brookview is getting quite perturbed with him and are worrying about their liability in all of this.

We need some magic fairy dust but heartfelt prayers will go a long way, too and we thank you in advance for them!

New Rehab Doctors

Jon went to Toledo yesterday and met with 2 rehab doctors at the University of Toledo. One is an associate professor in the rehabilitation field. We talked for almost an hour--of course, we waited almost an hour before we saw them. I had prepared a brief history of the places we'd been, illness and therapy. We've been told before that the catheter should be attached to his leg to keep it in place and that it should be loose. When they checked it yesterday they felt it was still too tight. It seems that even though Jon can not feel anything on his leg the pain that would have been there kinda travels to other places he can feel, such as his hands which have been really bothering him lately. It can also affect the way his medicine works. They have proposed altering his medication and hope that his doctor here in Defiance honors that change. Another appointment for June 21 has been set and they will take some time to really check his records thoroughly. They also wanted a list of the equipment available in physical therapy so they could prescibe some specific therapy to work on. We've been interested in getting some training in using a transfer board. Many, if not most, quads at his level of injury are not able to transfer according to them BUT they were impressed by the movement, the strength Jon has in his arms and his positive attitude. There is one set of muscles Jon hasn't really worked on that is necessary to successfully transfer which they think he should work on. If Brookview doesn't have the necessary equipment they may take him for two weeks in their clinic and do some work. Meanwhile the object is to see if the new levels of meds and adjusting the catheter does the trick on the muscle spasms and pain he's been having. Jon did ask about a special kind of surgery that a Dr. Goldsmith in Nevada does with an omentum muscle(?) transfer but since they only do work on non-invasive techniques and rehab they quite honestly said they didn't keep up on the new techniques in other types of treatments.

Jon continues to be out and about, mostly in the afternoons and evenings. He has attended a couple of concerts and had a good time. He got caught in a violent storm one afternoon (there were tornado warnings posted on TV) and pulled up to the Center with a lapful of hail. Greg got there about the same time and dried the chair off and hung the cushion up to dry. Jon thinks that since the chair survived this storm that his chair is "waterproof."

Meanwhile there is much concern on our part concerning the path Jon has chosen to be an independent soul by restarting his old habits. After discovering burn marks on his fingers the Center has put him on a nicotine patch.

Hopefully the sun will come out soon, in actuality as well as metaphorically, and we can enjoy some sunshine.

More thank yous

It's been a big week-end for Jon. So many people at my church have been asking me for updates on his progress that in addition to thanking all the various health institutions he's been in I decided to sign up for a coffee hour and bring Jon. The girls made cookies and came along to help serve (and clean-up!). The congregation seemed delighted to put a face to the name they've had on their prayers and concern list for over a year. Jon made a good impression on many of them and later in the day when I was at a Requiem performance they came up to me and commented on his great attitude. After we had the church kitchen back in order we all went over to Bob Evans for dinner.

On Saturday some friends of both Jon and Greg invited them over for a cook-out. The weather was cool but nice and they had a good time. The van he's been looking at was on the way there and back at home after being thoroughly checked by the lady's mechanic. Jon was allowed to get into the van but the door opening isn't tall enough for him to squeeze through. The lady still has her husband's chair which is much lower and Jon's got it all planned out that he can just have someone put him into the smaller chair to get into the van and then put the bigger chair on a lift in the back and then when he gets where he's going he can ride the small chair out and get put back into his regular chair. Sounds simple enough to him....

While his big chair has been a life-saver for him it's also beginning to be a pain in the neck. While it's designed to do many things it's not capable of riding up to a table and fitting under it so we have to take his tray with him or as in the case of spur of the moment plans to eat out Sunday one of us has to go back to Brookview and get it. It would be nice if the tray could stay on the chair and still be driven but somehow it interferes with the control panel. We're working on a flag for the chair. All I could find was a silly triangular bike flag that doesn't seem big enough to catch your eye and needs some special kind of rigging to fit onto the chair and still be taken on and off. For the moment we're just stuffing it down between him and the side of the chair that fits keeps him seated securely.

Thursday, Jon made the long trek to Antwerp for more dental work. A temporary bridge was put in place and he's beginning to be more comfortable with smiling! They've done a good job of matching his other teeth in color and look good. We found out on Sunday that the driver was Jon's nephew Joe's girlfriend's grandfather (whew!) was the driver. He hadn't recognized the Castanien name and I thought he was vaguely familiar but had only met him once at Thanksgiving a year and a half ago along wiith most of the rest of Jenny's family. Jon goes back to the dentist in early May for the permanent bridge.

Hope all is going well with you and yours.

Easter

We had an enjoyable Easter. It was a beautiful day, warm and sunny. We were again able to secure a large room at my church which is also close enough for Jon to wheel himself there. We prefer to have someone walk with him on his journeys and Josh accompanied him. Everyone was able to make it except Bill (Jon's dad.) The food was good, the company great, the day fantastic!

Monday, Jon, Barb and I went to see a van that is for sale locally and again within walking distance. Jon had seen it on Sunday on his way to the church with Josh and the owner decided to send it to her mechanic to get it in shape for a test drive so we weren't able to see it right then. She let Jon get inside on Sunday and he is excited. It has nice big windows so he would be able to see out. Most times the windows are too low and he can not see much past the berm. It has a lift. The original needed replaced and the new one was installed one week before the gentleman died and hasn't been used in the last two years. I've not been happy watching him go up on the lift in the medivans--something about the balance unnerves me--and the chair's owner's manual does not recommend a lift. Of course, they also don't recommend that he be in the chair when it is in the process of being lifted which presents a problem since transferring him to a seat in a van could be quite cumbersome. Jon, however, prefers the idea of a lift. I'm not so sure he's thought through the process of getting hoisted into a van in bad weather and how much longer that takes than just scooting up a ramp, both for the him and the operator of the lift. Aside from having a lift, the gentleman's electric wheelchair was much closer to the ground and therefore he did not use any tie downs. He just sat in his chair and off they went. Jon asked "What about when you went around curves or turned corners?" She said he didn't move. Jon's sways unless he is tied down well. So tie downs would need to be installed.

From there we walked back home and Jon had a chance to sit on our patio and visit a while. I ran after some fixings for a cook-out and Greg fixed hamburgers on the grill. Closest thing he's had to "being home" in a year and a half.

Tuesday, Carol, Barb and I went to see the staff at Parkview Hospital's Intensive Care Unit, where Jon was life flighted, to give them an update on Jon's progress and thank them for all they did to make it possible. Barb has a new camera and wanted to try out the movie selection. So along with taking a card telling about Jon's progress, Barb took a movie of Jon thanking them and showing some of the things he can do. The nursing staff really enjoyed reading the card and seeing Jon in the movie. They said that when Jon has transportation, they would love to see him in person. Rarely do they get to hear about or see prior patients so they love it when they hear/see follow up. Since they are in critical care, not many of the patients remember them which is also hard.

Hope you are enjoing this weather. Everythings greening nicely, both the daffodils and the tulips, and the redbud trees are so confused they are blooming at the same time!

More Venturing Out

Jon has had a busy week! With nicer weather he has been more anxious to be out and about. Last Thursday he made another trip across town to see his gal. Friday his sister Carol and her friend, Dave, took him to Findlay. His Aunt Betty passed away the week before and he wanted to go to the viewing. Not having a van capable of taking him they made do by lifting him out of the chair and putting him in the front seat of the car. Brookview loaned him a regular wheelchair to use. It seems there was some excitement while getting him out of the car. His cousin lifted him out of the car and tried to stand him up...Jon's legs buckled but thankfully he was caught in time before he could hit the ground. He had a nice time catching up with his cousins and looking through the many scrapbooks that Aunt Betty had accumulated during the years.

Tuesday was another nice day. I came home from some errands and noticed a group of people in the driveway around the bend. On closer look I saw that it was Jon and Greg. They had stopped on the way to the house to talk with a neighbor who also works at Campbells. Jon had wanted to check our garage for some things he left here. He is in the process of making his room at Brookview more homelike. He has about 4 of his nice pencil drawings by Albert Mukassa Wilson mounted on the walls (for those cousins living up north you might want to check his site: www.albertmukassawilson.com... If it's an Indian chief or has a motorcycle then it's a sure bet that either Jon or Greg has it!) There's also some of his Harley things that he had used to decorate his pool room when he had his own home.

Wednesday, he and his gal, Nancy, and other friends went to the Eagles for a St. Patrick's Day dinner. He passed on the sauerkraut and had a hamburger instead! Brookview has a van that will take him to local places so there was no problem with transportation this time. I understand he has asked about learning transfer skills so he may be back in physical therapy soon.

Hope you are enjoying the nicer weather as much as Jon is. There are daffodil and tulips shooting up in my front yard, the maple trees are budding and I'm especially looking forward to the red bed trees!

Another milestone passed!

Jon had a visit from his wound doctor who pronounced Jon's bed sore healed and scar tissue is forming over it. What wonderful news! He (and we) have been looking forward to this news for months. When we first started learning about bed sores we were discouraged when we read that sometimes they can take well over a year to heal and yes, now that I think about it, that is how long it was for Jon. However, the turning point was when Jon started eating solid foods in May. While it never got as big as the scary examples I saw on the internet it had gone deep. Jon gives much of the credit to the care he got at Westerville and vows to be vigilant in following procedures to keep a new one from forming. We're quite relieved and wish him well.

Dancing and the Dentist

Jon indeed had a terrific time at the dance Saturday night. There were a lot of friends from work as well as the group he hung around with. Also, his gal, Nancy. As I predicted he did get out on the dance floor and "showed off his form." Much to his credit there were no reports of running into or over other people's toes. Not too sure how often they have power chairs on their dance floor and with the darkness and all I was somewhat concerned. Anyway, a great time was had by all.

Jon took another trip to the dentist today for a second cleaning and impressions for his bridge. Dr. Bricker is retiring and the bridgework will be done under the supervision of a new gal, young and seems quite accomplished. His next appointment is on April 8th, his sister, Jo Marie's birthday. He remarked that she's been gone 30 years and would have been 46 years old this year. We've often wondered how life with Jo Marie would have been.......

Talked with Jon's dad about his cousin Mark's progress. He managed to go 4 years without getting a pressure sore but has evidently developed a doozy. It is at a stage 4 like Jon's and is now going through some of the infections Jon had but with much higher fevers. We wish him the best in a steady recovery--there is no "speedy" recovery for bedsores! Jon's sore has progressed to the point that it is barely visible. Great progress!

We're all looking forward to warmer weather--Jon is looking forward to getting outdoors and down the road again. We'll try to steer him down a different, much safer, road next time!

More progress

Jon continues to do well. He knew some of the staff already; the director was in his class at school. Some of them are former students of mine so that gives him something to start conversations. He is having a good time teasing both staff and residents and they tease him right back.

We went to the dentist last week to start preliminary work on his missing front teeth. I had checked with my dentist last summer and he was willing to take Jon on. He has two nearly identical offices in two small towns about one half hour away. (He was the one who fixed my teeth when I had a head on collision back in the 80s and his work is holding up very well but I didn't realize he would be handing his practice over to a rather young lady.) Unfortunately, I set the appointment at the office with one slight difference--the x-ray machine couldn't reach him since the chair most patients sit in wasn't the swing away type the other office had. He will go back next week for another cleaning, x-rays and I think impressions for a permanent bridge. He is looking forward to getting them fixed as he's been quite self-conscious when he smiles.

Josh and I took a large bag of bird seed to fill the 2 bird feeders that Jon can see from his window. A few birds have come but mostly one particular squirrel has enjoyed it. One day it sat feasting on seeds for almost half an hour. How it gets up a rather smooth, skinny (1 1/2?) inch pole and up over to the shelf is beyond me but he makes it. I took a suet block for the end of the feeder and had to wade through a snow bank over a foot deep. If I had checked first I would have noticed that the feeder was empty, too. I'm curious to see if squirrels eat suet also!

Jon reported that the Center was making an appointment with an urologist. He has been having some concerns about the catheter and we were pleased to hear that something might be done to take care of them. We are pleased with the Center so far although I keep thinking he should be getting some type of therapy and they're back to doing only maintenance type exercises. Got a call from the rehabilitation doctor earlier this week and she was going to set us up with a rehab doctor in Toledo but haven't heard back from her yet--Columbus got quite a snowfall this week on top of the last snow. Barb had called on Tuesday to say that her car was stuck half in the drive and half in the street. She keeps hoping someone on the street will be interested in earning extra money but no one has shown up yet. Jon's dad just got his drive and walk plowed out today.

Valentine's Day is fast approaching and Jon is going to attend a dance at the Eagle's. Knowing Jon and how he loves to scoot around in his chair I wouldn't be surprised if he makes it out on the dance floor!

Hope everyone is enjoying (or surviiving) the snow....spring is coming, sooner or later!

Push It!

My mom and I went to see Uncle J tonight, all in all a pretty good visit. He was giving us the rundown on all of the upper body and arm exercises he has been doing with weights and telling us how strong he was getting. He told me to stand up and he held his arm out, palm down and told me to push on his wrist. I wasn't sure what was up, so I was quite tentative at first and only applied light pressure to which he demanded, "HARDER!" I did and I'll tell you what, he had me- he resisted any pressure I applied! He is really building his strength in his arms and I told him I was pretty sure that if we had a table to arm wrestle on, he would smoke me! YAY!

....and More Independence!

I went to see Jon yesterday and they informed me that Jon was "out." "Out ", I said, "Where did he go?" She showed me the sign out sheet and sure enough a friend of his signed him out earlier in the afternoon. I said, "Hunh, I wonder where they got a van."..the reply? "They took off on foot, said they were just going down the road." They were under the impression he went to my house which is kinda just down the road. We found out later that their original intent was to go to a friend's house who indeed did live "just down the road" but he wasn't home....don't know why Shawn didn't notice that when he walked by the house on the to Brookview but.... anyway they decided to go across town to see the landlady that he'd done a lot of walk for and then ended up across the street at his girl friend's house. I asked about a ramp and he said no problem...they just laid two 2 x 6 boards on the front steps and guided him right up, slick as a whistle...and that's his story and he's sticking by it!

I passed the two of them on my way into town and the grins on their faces spoke volumes. Jon was thrilled to be out and about and is looking forward to more trips. My concern is about the condition of the sidewalks, especially on High St. where in some cases there are none and the traffic tends to move quite quickly.

Pray, folks, pray!

Independence Ain't Just a Dam in Defiance

So, I haven’t written a blog post in quite awhile. Even when I could go to Columbus and visit with Uncle J, I never felt compelled to write or share many of the happenings from my visits. Today though, Josh and I went to see Uncle J for a bit and Grandma was already there. He showed us the new room he will be moving to next week and I worked on his hands, giving him a mini manicure. There was a lot of grooming going on and his moustache was also trimmed for him. Then, it was time for a shave with the electric razor. The great part about that was that HE was the one using the electric razor!

I love these moments. He could’ve been doing this for a long time, I’m not sure, but this is the first time I have seen it. I have loved every time I see Jon accomplish a new task on his own. When he could feed himself with his utensils, learned how to use his hands to eat a sandwich or pick up chips, learned to maneuver himself to hit the TV buttons, and I absolutely love the way he can use his Camelbak to drink water himself. None of us could have predicted any of the events of the last 16 months any more than we can predict the next 16 months, but I can only hope that these instances of independence will continue to multiply!

P.S. I read an article in Forbes a few weeks ago that I found inspiring and I have pasted the link below. A-MAZE-ING!

http://www.forbes.com/forbes/2009/1214/breakthroughs-mit-herr-robotics-step-beyond-human.html


Angelique-I forgot to mention that I saw Jon leaning forward then pulling himself backward. That will make it even easier to position himself. The first time I saw Mark at the Village lean over to pull ouut a Kleenex I was amazed and Jon seems on the way to being able to move his upper torso more...
Grandma

Back in the Saddle Again

Jon came back from the hospital shortly before noon today and reports that's good to be back in his chair again! He looked pretty rough all day Wednesday and must have been pretty cranky but he was asleep most of the time that I bopped in. He did remind me on Thursday to bring his gum he asked for since I didn't do it the day before but I had done as asked. Since he was asleep I didn't wake him up to tell him I put it right beside the sink so he ended up with 2 big packs of Juicy Fruit.

The nurse at Brookview commented that if she had her way he wouldn't be in his chair so much...much the same that the Village had said. However, Jon balks at the idea and so we need to cross our fingers that his bedsore that is healing so nicely does not take an unexpected turn for the worse again.

He reports that his weight is down to 168 - that's a loss of 4 pounds for which I'm glad. He's carrying some of that along his jaws and his tummy when where he really needs it is on his bottom end.

Look forward to seeing some of you on one of my visits with Jon.

Getting to know Defiance Regional Hospital

Was awakened this morning on Brookview's third attempt at getting a message to me. They called on the land phone, (6 feet from my head)- then my cell phone (1 foot away) where they left a message and then again on the land phone which Greg answered. He finally got me awake with the second hit on the arm. Jon has been coughing the last few days and last night added a fever of 102. Oxygen level down in the 80s again so they sent him to the hospital just down the road. By the time I got there they had just admitted him. Blood had been drawn and chest x-rays taken. Found he has an itchy reaction to levaquin, an antibiotic, which was being given in addition to rocephin. Both medications are new to me although Barb seemed to think she recognized levaquin. They had an order in for a new medication when I was there at 5:45. Bless their hearts-they were going to call and give me an update around 8:30 a.m.

Went back around 2 this afternoon and his chest x-ray came back negative, his urinalysis showed a urinary tract infection and his sputum culture won't be read until sometime tomorrow. He already had a special bed and he was trying to nap. His fever still is in the 100-101 range. Stopped at Brookview to pick up his Camelbak water bag since his cleaning supplies arrived in the mail today. It has never been thoroughly cleaned since we got it. We were under the impression that that would probably be okay for the bag as long as it was constantly being filled with fresh water but the hose is getting a little yucky looking.

We are finally getting balmy weather--surpassed the predicted high of 30 by 2 degrees! Hope you're enjoying your winter so far. Thanks for looking in....

Signs of Independence

Yesterday I talked with Jon today and it seems he's had a bit of a medical emergency. He had an urinary tract blockage which can lead to a condition called autonomic dysreflexia which fequently happens to persons wiith spinal cord injuries. Since his injury is aboe the thoracic vertebrae he has no way of feeling pain and the body reacts in a different way to those signals. He noticed that he had very little urine output and asked that his catheter be changed. He had been questioning the Village about changing it since it is routinely done once a month. Somehow it was not changed before he left. Saturday a new catheter was put in. Sunday he noticed the urine flow was slow and it contained signs of blood (another indicator that things weren't working well) So another catheter was inserted. He also asked that his oxygen level be checked. Good thinking on his part, it was down to 85. Since respiratory therapists like to keep it above 90 he asked to be put on oxygen for a while and they put him back to bed for a couple of hours. They removed the oxygen when his level went to 95.

He has had several bouts with autonomic dysreflexia but I think this is the first time he had to handle it on his own and I'm proud of how well he thought things out. Barb said that she reminded him that that was one of the things he would have to take responsibility for since not all places have had much experience with quads. He went through the whole process with her of what to look for and what to do so that was a good reminder. Anyone wanting to know more about this condition can refer to: http://www.apparelyzed.com/autonomic.html for a quick overview.

I noticed when I was talking to him that he sounded hoarse and out of breath. He said he had been doing a lot of coughing and was congested. Today when I visited I took his little blue "pickle" which he blows into andmakes a rattling sound. Those vibrations travel to his chest and help break up his congestion. He hasn't used it since his last bout with pneumonia months ago. He blew into it at least 4 times today and said his coughing was a more productive.

His hands were really bothering him today. He had at least three sets of people work on them before I got there and he let me rub in some Aspercreme and then massage them. That seemed to help.

He also commented that he wasn't getting all his meds and wanted me to look at his medication list. Shortly afterwards his LPN came in and reported that their pharmacy wasn't sending all his meds--they didn't have them on hand and evidently they were slow to arrive when ordered. Since this wasn't a new problem they have changed pharmacies and were promised to have all his meds delievered by tonight. Certainly hope so.

Thanks for checking in.....

First week at a new home -- amended

Jon has been back in Defiance at Brookview on Harding Street for a week now. I stopped by today to take a picture of the view he has and found him sitting by the window enjoying it. I am happy to report that he is being seen daily by both physical and occupational therapy. He was looking forward to getting back on the mat and doing more with his legs and torso. O.T. is working on his hands again. He likes his new room. He has in essence a private room so there is plenty of room for his power chair and the hoyer can maneuver better without another bed in the way. Allows more space for company, too, which he seems to be getting almost daily. Having just family visiting was getting to be a drag, I fear. Greg didn't get down as often as the girls and I so he spends a good deal of time there and usually brings a friend along. He has been enjoying the company so keep it up guys!

The food is more to his liking. Looks more like home cooking and not rolled, pressed and thinly sliced! Think Greg took him some homemade meatloaf the other day, too. Jon reports that he is the youngest person at the facility and I think the population is mostly older women but that doesn't seem to bother him. A lot of the staff is younger and seem to know someone in the family and that gives him things to talk about. He and the Director went to school together and the Admission Director's mother and I worked together on Crisis Line in days gone by.

While visiting tonight I noticed that the wound vac was lying on the floor and he commented that the staff was so pleased with how his bedsore looked that he didn't need it anymore. It has very little depth and is looking good. Absolutely, positively what we have all been waiting for!

The weather here this week has been snowy as I guess it has for most of you. Hope you are making the best of it.