Happy New Year--he's back in Defiance!!!!

After an exhausting 36 hours Jon arrived at Brookview at 5:10 this afternoon. We started with a call yesterday around 11:30 saying he would be leaving this morning at 10. I called Carol and we got on the road around 1:30 with the intention of helping Barb pack up and load the car. When we got there Jon informed us he couldn't leave in the morning because the wheelchair couldn't leave the facility and while the company was debating that they said that nobody had paid any rent on it in months...as in at least 6 months and why did Jon still have it? But then they didn't even realize that he still had it until they were told he was leaving the Village. Then they said he could go if Jon bought the chair--$3500, but its worth at least $17000... So then the trip is on again and I think canceled one more time. At around 1 when we were eating lunch at Barb's they called and said he was leaving at 2. I hurried over to meet the gal from the wheelchair company, wrote a check for $2500--they reduced the price after umpteen calls to get things straightened out. (The chair can be serviced by the Toledo branch) and Barb and Jon were on their way by 2:30 or so. Carol and I were left behind to finish packing--managed to leave things behind on the tray table because Jon was so insistant that it not be touched when Carol was packing last night and I never thought about checking it out. Carol and I left about 20 minutes after Barb and Jon but we managed to catch up with them about 1/2 hour before reaching home. Got him settled, fed and left him to get acquainted with his new digs. His new address is:
Jon Castanien, Rm 222
Brookview Healthcare Center,
214 Harding St.
Defiance, Oh 43512

I can only imagine the rush he had when we crossed into Defiance County--he has been waiting so long for this trip! He is aleady beginning to feel like he's ready for more independence and is looking forward to resuming old friendships. The center has no set visiting hours but he generally is in bed by 10 and if it is like most places we've been they expect quiet visitors after 9 p.m.

Hope you have a great New Year!

Jon right before we went to the Zoo to see the lights.

The Roller Coaster Continues

First to finish off the time with the van. Jon and I thoroughly enjoyed having a van. On Saturday we went to the Iron Pony (a motorcycle shop he has been wanting to go to) and did make it to the Columbus Zoo for the lights. We went into the buildings before it got dark and after to get warm. He enjoyed it. Sunday he did go back to church with me. He said he had never been to a church like that before. I said is that good or bad? He said good. After church we went back to Iron Pony and then off to develop more film. We got back at 5:00. I dropped him off at the door and said I was going to return the van. I was on the on ramp when I realized my car keys were in his room. I went back to get them. I was just getting back on the freeway when it started to snow!!! God is so good. Jon was safe and sound before it started to snow.

Monday he gave me "permission" to sleep in Monday morning and that I didn't need to come in until late afternoon/early evening. He counts on me helping to put him to bed. At 5:00 p.m. I received a phone call from the receptionist. Jon wanted to know when I was coming in. I told her I would be there after 6:00. I got there at 6:25. Tuesday was so cold down here that after I took out the trash in the morning I didn't go anywhere the rest of the day. I didn't even go back out to bring the trash can and recycling bins back in.

Today at 11:41 Mom and I received the phone call about Jon coming home tomorrow. I got there at 2:03 after running errands. Mom and Carol arrived 4:45. Here comes the roller coaster ride. Around 3:00 the social worker comes in and says that she has to cancel him going home tomorrow. We just looked at her and she said "I'm serious". The corporate office of the wheelchair company said that Jon could not take the chair. Apparently the original sales rep had not filed some paperwork that he should have, that there had been no rent payments for the last 8 months. Then they called back and said that if the new facility would pay rent of $200-400 then Jon could take the chair. Then they called back and said no to renting it that if the facility wanted to buy it for $3500 that he could take it. The facility obviously didn't want to do that. We asked if Jon could purchase it for that amount. Around 4:15, I left to get my phone cord to recharge my phone, while I was gone the new facility called back saying that corporate had called them and said that there would be no rent, or purchasing necessary that Jon could continue to use the chair as previously agreed. So when I got back at 5:42, he was going home. I went to the bank and to pick up some dinner with Mom and when we got back at 6:15, we found out that the sales rep called the current facility and said no one from corporate had told him that so we are back off again. So as of 8:20 p.m. Jon is not leaving at 10:00 tomorrow. The sales rep is getting in tomorrow at 7:30 and will find out what is going on and will let us know in the morning what the final decision is. We are all physically and emotionally tired. Carol packed up his room while Mom and I were out at the bank and getting dinner. I loaded the boxes containing things that he does not use daily in my car. I'm pretty sure that he will be going home in the next day or two. If not I will be taking his stuff back in.

More to follow as it comes to us. Please pray that things go well tomorrow and that every one's emotions are better.

Coming to Defiance Soon-Like in 24 hours!

The Village at Westerville called just a bit ago to tell me that Jon would be leaving at 10 a.m. tomorrow morning (Thursday 31st) Carol and I are heading down this afternoon to help Barb pack and load up and we'll all be back in Defiance Thursday afternoon. What a way for Jon to usher in the new year--he's been looking forward to this day for months now!

Got to run...

Best Christmas gift!!

Over the weekend the decision was made not to come to Columbus for Christmas but to have it at Angelique's. Dad was staying in Columbus and Greg was going to come down after our celebration to spend the rest of Christmas with Jon. It was a hard decision to make. My emotions have been all over with all the changes going on lately. I prayed that Christmas is God's Sons' birthday and wherever He wanted Jon to spend Christmas so be it. I had a list of places I wanted to take Jon if we only had a van. The very next day after praying and giving it over, I received a phone call from the van rental company that they had a van for us if we still wanted it. I immediately called Mom to see if she could get the "reception hall" in her church to have Christmas. Angelique lives in the 2nd story of a house and so therefore that no longer worked. Within a half hour, Mom called back and said we could have the church from 12-6. Jon is still taking the IV and it doesn't normally end until 11 so that worked out fine. Jon and I asked if they could start the IV at 8 instead of 9 thereby leaving closer to 10:30. It takes about 15 minutes to get him strapped in and ready to go. I had called at 7:50 a.m. to remind them to start it at 8:00 and I was told it was started already. I got there at 9:40 hoping that it was almost done. It wasn't. Jon said they did not actually start it until 8:05. However, we were still loaded and actually left at 10:30!! Getting the van and taking Jon to my church for Christmas Eve service, taking him shopping and to Defiance for Christmas was my Christmas gift. We also plan on going to the Columbus Zoo for the Christams lights on Saturday and he wants to go back to my church on Sunday!!!! I told him we would have to go get a steak dinner. We haven't planned that yet. We have the van until Sunday night so we are going to use it!!!!!!

Christmas was very nice. Everyone liked having it at the church. It gave Jon room to ride around, they have a very nice and large kitchen, we ate together without being cramped and he had friends stop by to see him. Jon did not want me to publish in the post that he would be in Defiance until after the fact just because we didn't know how many people would try to come and we had to leave between 6 & 7 to get him back in time for the 9:00 IV (he could start at 10 and still be ok). His last day on the IV will be December 30th. Then the transfer papers can be submitted. We hope to have him home for good around the new year so he wanted to wait until he was home to have everyone stop in. As it was we got back at 9:25 and it was 10:20ish before his aide came in to help get him to bed. He was supposed to get his shower tonight but she didn't have time to do it all before her shift ended at 11:00. By the time she got in there I already had Jon out of his chair and into bed and was starting to get him undressed. The timing was good because it really takes two to get him undressed. His shirt and jacket we take off in the chair but the rest gets done while laying down in bed. When I left the room at 10:45, the IV had not been started yet.

When I got home and unloaded my stuff from the van I realized that I still have his eating tray in the van. Charlie (my dog) had been in the house for over 12 hours without being let out. After he came back in I was just too tired. If they give him a shower in the morning before breakfast then I should be able to get it back in time. If they don't give him a shower, then he won't have a tray to eat on. He eats at 7:00 am.

Hope everyone's Christmas was as blessed as ours. Merry Christmas to all!!!!!!

Barb

Roadblock Ahead

When the good Lord wants to put a halt to things some of us have to be hit over the head! Troubles began for Jon when he tried to transfer to another facility. It seems that the medication that he is on is not covered by Medicaid and is quite expensive, to boot. Our first choice of placement won't take him as long as he is on that medication. The social worker is looking into 2 other choices, one here in Defiance and another in Wauseon which is about forty minutes away from Defiance. When the director of the first facility told me they wouldn't take Jon ishe just said it was because of the IV. I didn't translate that as the medication being the problem but thought it was just the process of having people on IVs. Now that I know it is the medication I rather doubt that the other two places will take him since the medicine is not only not covered by Medicaid but is also quite expensive.

Jon's solution to the problem is "Fine, I will just switch back to the pills!" I can only imagine the amount of badgering he gave the wound doctor. I have on occasion said "have it your way" although lately my solution is to just walk out of the room. This doctor, however, finally gave in and said okay when he leaves he can be switched to the pills. The other two doctors who have, I gather, top priority have said absolutely no way, no how, is he going to switch back to the pills.


Jon's response was okay I'll just sign myself out of here--who knows where he thought he'd go....After some heated discussion with the social worker, bless her heart, he was convinced that leaving against doctors advice might possibly cut him off of any further coverage by Medicaid. He has reluctantly agreed to stay put and she is continuing to check out other facilities. You know how disappointed he is when he says that there is no point in our coming down for Christmas if he can't be at home. Meanwhile, I have dibs on a 2 hour stay in the activity room on Christmas day which I will know more about later today. On the way home I was even running through people we know who might not be using their van.

Yesterday was Greg's birthday and Carol and I came home from Columbus in time to pick up a cake and some Kentucky fried chicken for his birthday supper. (This is after dealing with Jon) Sat down to enjoy the meal and discovered they had not packed up several of the items I thought we needed so went back to get them. It was late by now-eightish and people were hungry enough that when I came back they had finished eating and seemed quite full, thank you! After cake and cards everyone but Angelique left and we settled down to a game of Scrabble. When it was over--she clobbered me--she went to the bathroom and noticed a dripping noise. We checked and nothing seemed to be dripping anywhere but now it sounded like water was running. We checked in the closet behind the bathroom and tried to turn off the water but to no avail. I made a frantic call to a friend in the plumbing business. After checking to make sure I had turned the water off correctly he noticed that the meter wasn't running and announced we had a broken pipe somewhere between the side of the house and the meter. Another call to the water department who of course had to know the correct spelling of our name and could we spell it slower, and then the address, we had to wait for a call from the person who would actually come and turn the water off at the street. My friend stuck around until the fellow came and helped him stab in the dark along the street until he finally hit the shut off valve. All in all, I think I have about an hour's worth of gushing water in my crawl space and soaking into the walls of the bathroom and 2 closets and probably the flooring and insulation. Sooooo, no I won't be having Jon come home to Defiance for Christmas--I might not even be home for Christmas. (And I didn't have to be hit in the head that hard, Lord.)

To top if off the lady from Toledo who is supposed to check out the house is scheduled to come around 11, stuff from the closet is everywhere, I have a therapy appointment at 9.

It is now after 8, I can call the plumber and my insurance agent and get things rolling. Hope your Christmas plans are going a lot smoother and mine. We'll probably take Angelique up on her offer and spend part of the day at her apartment if we can't get the 2 hours at the retirement center.

Again, You have a good holiday and we'll keep you posted on things--

P.S. Jon's Dad fell last week-end and had 2 collapsed vertebrae. He was operated on Monday and had them filled with a special hardening agent and is recuperating at Barb's. He seemed much better yesterday and ought to feel up to being back at his apartment some time next week, if not before.

Jon will be in Defiance to stay by Christmas!!!!!!!!!!!

Mom, Jon and I met with Medicaid Waiver Program today at 1:00. We talked to them for 2 hours and 40 minutes!!! The bed and hoyer will be paid through regular Medicaid but need to be ordered by a PT or OT. That will need to be ordered through the current ODJFS case manager. All requests will need to go through the case manager. The assessor for the waiver will submit his paperwork on Monday. It could take as little as 4 weeks or as long as 3 months to get approved. The approval letter will be sent to whatever Jons address is in Medicaids system. So it will follow him to Defiance. The safety assesor still needs to come out from Toledo to do his part. Once the waiver is approved, they will assign a case manager out of Toledo.

We are still going to move Jon to Defiance, it just won't be to Moms. Since his wound is not healed yet (Jon said that it had not changed in 2 weeks but this week it has started to fill back in again) and the infection is in the bone Medicaid said he will need to be in a facility. As soon as the assessor left, I asked Jon "So when do you want to go to Defiance?" He said "Tomorrow". (I knew the answer I just wanted to hear him say it).I asked "Even if it means going to another facility instead of Moms'?" He said "Yes, at least I will around more family and my friends." This will allow Medicaid time to get things approved and time for us to get the addition done or at least the walls up. It obviously won't be tomorrow (today as most of you read this) but it will at least be before Christmas. Mom walked over to the Social Workers office and gave her the name of the place in Defiance and she is starting the process.

The Medicaid waiver program will pay for the modification of Jon's current bedroom into a bathroom but it needs to go through the whole bureaucratic system. We can not start getting approval for that until we have the initial approval described above. The assessor said to plan on waiting 3 months for anything Medicaid needs to approve. They also will need to post the bathroom improvements on a bid website. All contractors need to have a medicaid provider number. We can request a certain contractor, however they will still need to post it for bids. There's no guarantee that Dean & Jon's friends can do the bathroom. He confirmed that Medicaid will not pay for an addition so that can still be done by Dean & Jon's friends.

We are all so pumped. Thank you to everyone that prayed for Jon to be home by Christmas.

Gotta go. This is the 6th night in a row that I have gotten to bed at 11:30. Charlie, my dog, has also been getting up alot at night so I am getting even less sleep. His digestive system is messed up. I am hoping to get a full nights sleep tonight, we'll see.

God bless you all.

Barb

We have a Medicaid meeting!!!

Tomorrow (Wednesday) at 1:00 pm Mom, Jon and the Columbus Medicare meet to discuss what Jon will need. As long as Jon is on the wound vac he will need to be in a facility. One of the questions Mom will ask is whether we can transfer Jon to a facility in Defiance. Now that he has been assigned a case worker out of Toledo, he will keep the case worker and we should not have to go through all this waiting again. So once his wound is healed and the addition is done, he should be able to come home without having to go through all this redtape. In the meantime, I am really trying and praying that we can get him in Defiance and he can have Christmas with us at Moms. I have talked to Jon's friends about the ramp and the goal is to have it up in time for Christmas.

Mom has not heard from the Toledo office yet to come out to the house.

Thursday the Village is having a Christmas party for the residents and their families. I arranged it so I don't have to work that night and can be with Jon. I don't know if Dad will come or not yet.

Please pray that Jon will be able to be transferred to Defiance before Christmas.

Barb

There is light at the end of the tunnel!!!!!

At last we hear from Medicaid!!!!! The Toledo office will be contacting Mom in the next 2 weeks (from Thursday 12/3/09) to set up a time to come out and look at the house to let her know for sure what improvements need to be made. The Columbus office will be coming out in the next 2 weeks to assess Jon's condition in order to decide what services/needs he will have once home. So there is finally a light shining at the end of the tunnel!!!!!!! It is pushing it really close to say that Jon will be home by Christmas to stay. If the rental van comes through Dad has agreed to drive Jon up to Mom's for the day. He can't spend the night until we have a hoyer or some way of getting Jon in and out of bed. I have not seen Jon since we received the news. I will be going over this evening.

Jon met with the Rehab Doctor. She wasn't sure why they were meeting with her. It was a very frustrating visit for Mom and Jon. The Rehab Doctor doesn't see a need for Jon to come to Dodd but says he needs to have a pyschological test (nothing out of the ordinary, typical for situation). We are assuming he will go to Dodd for the test unless it is something that Village of Westerville can administer.

Jon is finally starting the IV drip for the wound infection. He was given a choice between the drip and pills and he chose the pills as he did not want to be tied down to a drip. He likes his freedom and he isn't able to drive around when on the drip. The IV drip is more effective and the pills are not working as they would like so like it or not he is on the drip.

We have been looking at a van to purchase. It is a 1987 Chevy van that has around 75000 miles on it for $2,500. Dad and Mom are saying no, Jon and I are saying we would like something for at least a year until we can get something newer. We don't know how owning a $14,000 - 29,000 van affects Jon's Medicaid. That is the range we have found on the internet for current handicapped accessible vans. It costs roughly $50,000 to convert a typical van to a handicapped accessible van. Medicaid will pay for the conversion only if you currently own a van. They will not pay for a van just the conversion. To me it is cheaper to buy one that is already converted but we are dealing with bureaucracy.

That is all for now. I will write more after talking with Jon. I will see if he wants to write a post.

Please pray that we can bring Jon home before Christmas to stay!!!!

Barb

Apologies

I am very sorry that it has been so long since I have written a post. I have been busy with my second job and haven't been getting to spend much time with Jon. I have been going over between 9:45 - 10:00pm. Sometimes he is awake and other times he is sleeping. One of my jobs is to pick out his clothes for the next day. I hold up the clean clothes, he tells me which he wants to wear the next day and then I put them out and put the others away. Sometimes thats all I do, if he is sleepy.

He is very anxious to get home. We were all hoping he would be home for Thanksgiving and that didn't happen. I was supposed to order a van for Thanksgiving and didn't get it ordered in time. I was in the middle of getting new insurance as I have a new (to me) vehicle! A family from church gave me a 1998 Century. It is nice not to have to worry about whether I will make it from point A to point B without breaking down. While the new insurance was being approved, the old insurance was liability only and I could not rent a van with liability only. When my insurance got straightened out, all the vans were rented. Jon was disappointed. He told Mom and the rest of us to go ahead and go to Toledo to the Slawson side for Thanksgiving, that he would be okay here. Dad spent all day with him so I felt better about not being with him. It ended up being a good day for all of us.

His throat is healing well from the trach being taken out. The hole in his belly is healing nicely from the feeding tube. The bed sore is starting to get smaller again. Each Wednesday Jon hopes that the wound vac will be taken off and each week they keep it on. Since they took it off before it was fully healed last time, I think they want to make sure it is healed before taking it off this time.

We are just waiting for Medicaid to approve a waiver we applied for clear back in July!!!!! The social worker keeps checking with Medicaid but we don't have an answer as to why it is taking so long. One of the problems I'm sure is that he is currently residing in Columbus so Franklin County is processing the paperwork but Mom resides in Defiance and that is where Jon will be. Part of the waiver includes money to help with making modifications to the current home (will not pay for an addition but will pay for equipment needed and putting in a bathroom in the current bedroom). The house will be inspected out of the Toledo office of Medicaid so the Columbus office needs to coordinate with the Toledo office to get everything done. We don't know if this is part of the holdup or what. We are all getting frustrated but especially Jon. He just wants to get home. He hasn't been getting any kind of therapy for quite a while now and so there's no medical reason or therapy reason to keep him in Columbus anymore. We are trying to get him to agree to go to Dodd hall before he leaves for Defiance but he just wants to get home so we are having a problem convincing him to go. The goal for all of us is to have him home in Defiance for Christmas. It can't be soon enough for Jon. He has an appointment with the Rehab Doctor at Dodd Hall on Wednesday. She will be his permanent Rehab Doctor, even when he goes home. We are hoping she can get things moving (not sure how though).

Dodd Hall not only offers therapy but training for the family, counseling, water therapy, electro therapy (don't remember the actual name) and driving school to see if he has the necessary skills to drive with adaptive equipment.

I am late getting over to see Jon. I have been having problems with the computer both at home and at Jon's. At Jon's the center does not have a registered security certificate and so my computer doesn't like to use the internet there. I have to change some settings and it hasn't been working right.

Jon says hi to everyone and hopes your Thanksgiving was good.

Please pray that Medicaid approves the waiver soon and that we can get Jon to Defiance before Christmas.

Blessings,

Barb

Bed Sore gets bigger

Jon finished with the antibiotic for the MRSA. They have scheduled an MRI to check the wound again as it is now getting wider as well as deeper. The MRI is scheduled for Thursday the 12th. He has been going to bed in between meals. The aides aren't very happy with all the extra getting up and laying down but there's not much that can be done. The Dr doesn't want him on the bedsore for very long so it limits the time in the chair. They still don't want him eating in bed even though he has a different bed. So Jon and the aides just have to adjust.

Jon has gained 5 lbs in one week and 8 pounds in 2 weeks. Mom is concerned about the weight gain and was wondering if Diabetes was a possibility (what she didn't know is that Jon has been eating a lot of candy since Halloween and has been supplementing his meals with what I bring in for my meals). Dad has diabetes and Mom is borderline so it is a legitimate concern. His blood test was 115 for 2 mornings in a row. The acceptable range is 80-120.

Jon is getting anxious for work to start on the house. Cousin Dean is working on a floor plan putting an addition on the back of the house. Some of Jon's contractor friends came over on Friday and is suggesting a 12 foot extension off the back. They are anxious to get started on the footer before the ground freezes. They will be donating some supplies but need to know what supplies are needed.

Mom looked at a van that is supposed to be wheelchair friendly. However, it is geared for someone in a manual wheelchair and not one that is as tall as Jon's electric chair. So the search goes on for a handicapped accessible van.

Mom & Carol came down Tuesday through Thursday. Mom will be back Tuesday for her 4 week check up on her wrist. Angelique came down and visited Jon on Sunday for a few hours. They had a nice visit. Angelique, Jon and I took a walk over to Kohl's and did some window shopping.

Well it's late and I'm going to turn in. Maybe I can take the computer Sunday and have Jon write a posting. I apologize for not posting in so long.

Many blessings,

Barb

One year since accident!

Last night we found out that the wound itself is infected, with MRSA again. He started taking Bactrium DS, a pill, twice a day for 7 days. The x-ray was primarily taken to find out if there was an infection in the bone (which could only occur if the wound had made it's way back to the bone). Luckily there is no infection in the bone therefore we are assuming that the wound is not at the bone. The hole is too small to look down. Greg came last night and a friend, Paul, came to visit today.

"Hello everybody this is Jon. It has been one year since my accident. I have good news. It feels great to have my trach out. It does not bother me to swallow food anymore or when I move my neck around because the big lump in my throat is gone. The hole in my throat is almost healed. But it will be a little bit longer before it is fully healed. They keep it taped shut and change the dressing daily. The opening for my feeding tube is almost completely healed. It looks like I have two belly buttons now : ( In other words I have two innies!! Which makes me very unique. They are saying that any day now I can have my home evaluation (this will determine the amount of waiver he is eligible for. This is what we have been waiting for all these months.) After that I will go to Dodd for 3 weeks and then I will go home. So soon I will go home to everybody. Have to go. Love to everyone. Bye."

My title originally read "One step back, One step forward". I was looking at Jon's wound as being a step back. He is focusing on the fact that he is getting to go home soon. It reminded me that he has come soooo far since the accident that the wound is small compared to all the progress he has made. There will always be obstacles but it does not have to become a set back. He is not seeing the wound as a set back.

Good News, Bad News, More Bad News

Jon called me tonight and asked if I was coming over, I told him I was on my way. He said he had good news and bad news.

Good news: When I got there, he told me about his trip to the ENT (Ear, Nose, Throat Dr.) yesterday (Tuesday). His trach was totally taken out!!! He said it went very well, no hitches. He said he is able to swallow much better and can bend his neck without the trach getting in the way. When he took a drink, he was supposed to tip his head down so the fluid would not go down the wrong pipe. Those instructions have been removed.

Bad news: He has major wax build up in both ears. The last visit to the ENT (when they put a size 4 trach in) the Dr. had requested that they flush Jon's ear with a peroxide flush to soften the ear wax. The nursing facility apparently never got those instructions and his ears had not been flushed. The ENT cleaned the left ear and it was easier to get out. The right ear was too hard yet. They have given new instructions to flush the ear again. Jon has a follow up appointment with him in 2 weeks again. He is now able to hear out of his left ear. Jon has been complaining about that being his bad ear and that he has not been able to hear out of it very well. Now his "good" ear has become the "bad" ear.

Bad news: We knew that the wound was getting deeper. It has been confirmed for Jon. It is not getting bigger, but deeper. The wound doctor doesn't know how deep it is yet. They will do an x-ray on Thursday morning to find out just how deep it is(The Dr wants to see if it is back to the bone or not). Unfortunately, this particular spot will be susceptible to bed sores as the muscle is already gone and they have not put a skin flap over it yet so it is very tender. As a result of it going deeper, the Dr. has ordered a couple of things: 1) in order to take pressure totally off the bottom, Jon will be put to bed 3-4 times during the day. He will get up in the morning and eat breakfast, then go to bed for about an hour where he will be put on his side. Then he will get up again, sit in his chair for about 2 hours which will be over lunch time, go back to bed and get up for supper. Then he will go back to bed for the night. They said the Dr. wanted him to get him up again one more time but that would be within an hour of his normal bed time so he will just stay in bed for the night. 2) The wound vac is back. 3) The Dr. has ordered the bed that has the silicone beads in it. I have mixed feelings on this. I still say that it can't do it's job with a wound vac on. The last one wasn't working right as the beads weren't bouncing much anymore. If you aren't going to let it work right then why get it. They feel that it is a preventive but what we need right now is a treatment. But it's not up to me.

I think I have remembered everything.

An update on Mom. Her sister, Susan, picked her up on Tuesday and took her to their mother's house in Michigan. Mom is trying hard now to overdue it but not using either elbow or the left wrist is not easy and she is overdoing it. She ran out of the pain pills last Thursday (the Er only gave her a script for 12 pills) and did not get a new prescripion until Monday so her weekend was pretty painful.

Thanks for checking in.

Back on the Home Front

I was hoping Barb had some time to post this week but she's had her church responsibilities and brought me half way to Defiance Wednesday which didn't give her enough time to really visit with Jon afterwards. Before I left for Defiance I checked and found that they had no record of Jon's return visit to the ENT doctor on Tuesday. The doctor will hopefully remove the trach for good and clean his right ear. Jon now has transportation arranged. I also requested that they not take out the PICC line for IV's but again they are really afraid of infection which realistically shouldn't happen with proper care...Jon's veins are rather "tough" and I think it's hard on them to keep putting lines in and out. I would feel a lot better if he didn't keep getting infections or pneumonia every month or so.

I am trying my best to abide by doctor's orders but you can imagine how hard it is to weigh every thing in terms of "lighter than a coffee mug." The right arm has no cast , or sling, so it is getting a little more use than it should. I should also add that in addition to the fracture in one of the bones in my left wrist (which is in a cast) my left elbow also has a hairline fracture as does the right elbow. And the bruise on the left elbow is far darker than the right.

The fellas are learning how to cook. I walked Greg through the process of making breaded pork chops last night and Josh just finished making a meatloaf.

Must go--wrist aches from hunt and peck typing! Thanks for checking in.

The Good, the Bad and the Ugly

In spite of Barb's effort to take measurements and compare them with the height of the van, the angle of the chair and Jon's head did not clear the door upon entry. It required leaning the chairseat back so far that we had to push it in manually--all 450+ pounds. Then he had problems getting it centered so that it could be tied down properly. We finally got things fairly well situated and were off...and rather convinced that this was not the kind of vehicle we'd be looking to buy.
The day went very well. Everyone was delighted that Jon made it and was doing so well. People were in and out of the cabin all day giving them a chance to visit. He and his cousin Mark, also wheelchair bound, had a chance for long talks about adjustments and home modifications. We left about 7:30 with Angelique riding with us and Greg following so he could take her back to the campfire which they all enjoy so much. I sent them back about half way home and found someone to help me get the wheelchair unfastened. A worker got one side and showed me how to do it and I started to go around the van to do the same on my side. There was just one flaw...I forgot I was on the ramp and tripped. Jon described my fall as looking like I was diving into water with my hands straight out. I did a quick check and while I was sore everything seemed to work; fingers, arm, no bump on the head... just a broken fingernail that I had heard crack taking a good chunk of my fingertip with it. (I had been worried that it had been a bone snapping.) I got him all settled and unpacked the van and headed for home. I took an extra duty Tylenol and waited for it to work. Two hours later I headed for the emergency room. Six hours later, and at least 9 x-rays, I left with the finding of two severely sprained elbows and a possible fracture of the scaphoid bone at the base of the wrist on the thumb side which necessitated a splint. Later I had a call that the x-ray of the right elbow showed a fracture also. Tomorrow I get a cast on the left wrist and my guess is another on my right arm.
Today Jon had great news for us when we arrived saying that the feeding tube had been removed--one more goal met and another step closer to being discharged! ...and that it was his last day of physical and occupational therapy. I had a little chat with the head of therapy and that may not be the case. We think everything is a go for the power chair which he won't get until the week of discharge, whenever that may be.

Correction

Somehow there's an advantage to delaying a post. I got the distinct impression when I heard that Friday was the last day with the occupational therapist it was because she was leaving. I can't even imagine hearing the words "last day" without asking if she was leaving but somehow I misunderstood. She's still at the Village and supposedly Friday was to be her last day with HIM however, she fitted him with some sort of brace Monday to stretch his thumb on his left hand.

....and still more developments

The speech therapist moves fast! Thursday morning Jon headed over to St. Anne's for a full blown swallowing test. Food is "tainted" with barium and a machine tracks it as he swallows. Jon said it went well but I haven't heard the official results yet.

Thursday afternoon Jon and I talked about the whole physical therapy bit and how he needed something more detailed than the arm swinging he does during the pressure relief minute or two every half hour. So we decided that on days when no therapy is scheduled we would devote that same half hour every day to our own program. We're including more head movement since he still is relying mostly on looking at you out of the corner of his eye instead of moving his head and looking head on. Also including shoulder shrugs and arm movements. So when when his occupational therapist announced that she was leaving also Jon told her I was already starting to do therapy with him.

Yesterday I managed to get some time to cut his hair--Thursday I soaked his hands so I could trim his nails. Last night the nurse told us that the throat culture that had been taken earlier in the week showed that the type of pneumonia he has was resistant to both zosyn and cipro which is what he's been on for the last week. Another medication will be started today, my memory fails me at this time as to what it will be.

Arrangements are coming along for him to attend the family reunion next Saturday. Barb's located a van rental agency that has vans that are equipped for wheelchairs and we have tentative approval from the doctor. Jon's really looking forward to the trip and it will be a good trial for the long trip home since this is a two hour trip one way. Thank goodness his chair tilts way back and he could get a nap in either direction,

Thanks for checking in. I won't be back until Tuesday when I bring Carol.

Getting Closer to One Goal

Earlier this month the PT had set 4 goals for Jon before he went home...getting rid of the feeding tube, off the trach, the wound vac and oxygen. He is not using the feeding tube for anything, including medications but he has to be stable for 6 weeks afterwards before they will remove it. He is off the wound vac which leaves the trach and oxygen.

We finally made it to an Eye, Nose, Throat doctor to map a plan to get rid of Jon's trach. He agreed it was past time to downgrade the size of the trach and replaced it with a size 4 Shilley. While we were there he also checked Jon's ears and said he had a lot of wax in both ears and started to clean out the left one. It was rather like watching a dentist at work. He had a long, skinny instrument that he used to pull out pieces of wax, wipe them on his cloth and then go in for more. Jon would wince a couple of times and then let out a loud ow! He had pulled out a piece the size of your little fingernail which looked like dried tar. He didn't do the left ear which he said was even worse but would do it on the next visit when he would probably removed the trach. He suggested putting a couple drops of hydrogen peroxide in the ears periodically and let it bubble to loosen dried wax and let plenty of soapy water get in them while showering. Even though I told him of the numerous time Jon has had aspirational pneumonia he didn't think a swallowing test was necessary. However, the speech therapist had noticed the number of times that Jon coughed during meals and has always wanted to know exactly what was going on so she has ordered a swallowing test for tomorrow.

When setting up the appointment she informed me of still more new changes in Medicaid. If you remember the four things$3.91 @ day was to supposed to cover (therapy, medication, transportation and wheelchairs) it wouldn't surprise any of you to know that starting in October we may have to start paying transportation costs for trips outside the Center. It was supposed to go into effect tomorrow but the Admission Director said emails had been flying all day and the last word was No, the charge wouldn't be passed on to residents. However, what are the odds?

That's all for now, thanks for checking in.

Holey Moley- What now?

Several new developments: The Village must have decided that they had some dead weight to get rid of and people have been leaving left and right. Unfortunately in our estimation the wrong people are not being given a fair chance and the ones who should be leaving are still hanging on! Jon’s physical therapist was one of those who left and we are overwrought, to say the least! Jon’s therapy had been cut back earlier to 3 times a week and in the week Matt has been gone he hasn’t had therapy once.
When I questioned the director she had no idea why Jon wasn’t getting any at all. My guess is that the cut to three days was probably made due to the new way Medicaid is handling payments to rehab centers and nursing homes. Instead of the center billing Medicaid they, Medicaid, in their ultimate wisdom, are giving them a grand total of $3.91 a day per Medicaid patient to cover: all therapies, medication, wheelchairs and transportation.
Due to the lack of therapy there is a good chance Jon will be sent home at the end of October. We are still hoping to get him to Dodd Hall for some training for us but getting therapy there at the same time may be next to impossible.
Last week Jon had an x-ray of his stomach which still remains bloated. It showed the usual back-up in the bowels and was supposed to start a regular routine to address the problem. The x-ray also showed a part of his lower lobe of one lung and it looked suspiciously like he had pneumonia again so they set up a CT scan which was done on Tuesday. Thursday evening the results were back-yes, pneumonia- and they inserted still another PICC line (which they should have left in place the last time instead of removing it!) so they could start him on zosyn again. It’s a strong medication and needs to go into a larger blood stream.
I have had meetings 3 days this week and have only seen Jon in the evenings. They have changed his rising time so the night staff gets him up, dressed and in his chair before 7 so I expected to see him tired when I got there but he has seemed exceptionally whipped. He says he’s been having trouble coughing and has done quite a lot of it.
Tonight I got a call from the Village saying they were sending Jon to OSU--they weren’t sure of the reason--just that Dr. Conaway’s nurse practitioner had seen something on the CT scan she wanted checked out. Barb called to say that when she finally got in to see Jon the staff wasn’t sure why Jon was there, they were to check for possible pneumonia? and they were sending him to x-ray. Barb was livid. She explained about the scan and the medication so OSU called the Village. From what Barb could gather the Village sent him to OSU because they were understaffed and he could get better treatment there!!! Just got a text from her saying: “Dr said not a valid reason. Jon lives there. They can’t just send him out 4 the weekend. If they can’t find a valid reason to keep him he will go back 2night.” She added that the PICC line isn’t working right so they had to put in still another IV line to draw blood. Poor Jon! ...and poor Barb, she was looking forward to being able to go home by 9 and kick back and I came home yesterday to finally have my colonoscopy which had been rescheduled 3 times so I’m of no use at all. His Dad already left and said he’d be back tomorrow...no point in hanging around, I guess.

Barb called to say Jon left OSU around 8:30 and was headed back to the Village. ER couldn’t find anything they hadn’t already found and was being competently treated.

One other flaw in the ointment. We have had trouble with the applications for waivers for house modifications, a vehicle, outside professional help and the wheelchair. (While Jon presently has a wheelchair it is a loaner from the company and a new one will be made according to his specifications when the waiver comes through.) The first round of applications through Jobs and Family Services have been denied and we are waiting word on the second set. Some other grants are already out of money and none will be available until after the first of the year and are not yet taking applications. Those of you willing to help with a ramp email me at castanienm@yahoo.com and we’ll at least get started on that. Thanks.

Progress--Slow but Steady

Jon continues to make good progress. He is now off the feeding tube and takes all his medicine orally. If he remains stable for 6 weeks without needing the feeding tube for anything-including meds- it can be taken out. His visit to the urologist went well-nothing appears to be wrong and he learned about the other options to total catheterising. His physical therapist has won two arguments with the staff. One we welcome and another we look on with some trepidation. A few weeks ago the railings on Jon's bed were removed because they are "restraints"--ones we welcome but nevertheless restraints in the eyes of the government. Matt (PT) has been wanting to get rid of the bed we thought we would like but never really seemed to work in with their wound care practices. In addition, it didn't get all the servicing we thought it needed. Anyway, a new bed came today...minus any railings and narrower. It, too, is an air bed. It can be set to several controls and at the moment pulsates every ten minutes.

The other point Matt has been trying to succeed at is getting Jon on a bowel control program. He was finally successful and we are pleased. On the 29th Jon has an appointment with an Ears, Nose Throat Specialist to set a timeline for getting rid of his trach. The optometrist comes tomorrow and we hope he brings Jon's new glasses. His old ones are really pathetic. How they survived the accident is beyond me.

Whoops, My Apologies

Where does the time go? When Barb and I get home from the rehab center we are both exhausted and there are chores there to do also. When the wound vac came off they ran a culture and found that it was positive for mrsa again. That's the bacteria that is highly resistant to antibiotics. It's my understanding that it never really goes away completely and is apt to reoccur. There are 5 antibiotics that still work and I notice that his present one is the third one of the five that has been used for one thing or another.

His mood is generally good although last week I didn't see the sparkle in his eye that I usually see. He continues to enjoy word searches. Last week I was trying to talk to one of the other patients and he was naming off words he had found and I finally handed him the pen. He could circle about 3-4 words, sometimes using the left hand to steady the right one, before he handed it back to me. I bought a new game called Sort It Out while I was in Baltimore which I think he will enjoy. You have to put 5 sets of things in order from great to least (or visa versa) or the time in history they occurred, etc. You get a point for each item you have right.

He continues to gain weight which is good, at least in their eyes. I don't know if they realize how much more than his normal weight he is putting on. He usually weighed some place in the mid 140s and he is presently at 152 (+?) I'm not sure they realize the strength capabilities of Carol, Greg and me! They have cut his night tube feedings in half and we are really looking forward to the time they decide to stop them.

I'm taking Carol back with me today and so I hope to have a more complete report for you soon.

Again, my apologies for the delay. I can't get over how many of you check in on a regular basis! Thanks ever so much.

No More Wound Vac!!!! No More Wound Vac!!!!

I told Jon Tuesday that I may only be able to come up for 15-20 minutes on Wednesday as I had to work at the church in the evening. I had trainings all day. The morning training ended way early and they let us have a very extended lunch so after typing the blog about the field trip, I went over to see Jon. He met me in the parking lot. Instead of saying "What are you doing here? I wasn't expecting you" as I thought he would, he started to sing.
It was to the tune of Ring Around the Rosie. It went like this:

"No more wound vac, No more wound vac.
I don't have to wear a wound vac.
I should drink a six pack, I should drink a six pack (keep reading).
But I won't and I can't. I don't even want to. (!!!!!)
No more wound vac. No more wound vac."

He continued on saying that they will use a cream for what is still left. "Matt is excited. He won't have to take it off (the chair) and put it on the mat anymore where it gets in our way. It won't stink anymore".

Obviously he was very excited about the wound vac being taken off. That is one of his goals!!!. It just makes it nicer all the way around. The hole is only the size of a quarter, including the depth.

I forgot to say that the sputum test came back negative. Yeah!! Although he is still coughing alot. He has finally figured out that if he leans forward that it comes out alot easier. Last night and tonight he got quite a bit out by leaning forward and coughing. The urine test is still not back yet. Although Matt commented on the amount of sediment still in the catheter. Speaking of the catheter, I don't remember if I wrote yesterday that it had backed up. He had no output from 6:45 am to 3:00 pm. They had to put him back to bed and put a new one in. He was one tired puppy last night when they put him back to bed for the night. He was falling asleep in the chair and therefore was cranky when they finally got around to putting him to bed. He had a long day.

Tonight Mark came back to visit. Jon was saying that the 26th was Marks' birthday, the day after our mom's and Mark said yes. Jon didn't say anything and finally Mark said "So are you going to say Happy Birthday?" Jon laughed and said he thought today was Friday not Wednesday. Anyway, both Mark and Jon had a nice visit.

It's late and I am tired. I did go back over to Jon's at 10:15 after I got done with my job at church. He was already tucked in and we just chatted. I just got home at 11:15 and started his laundry.

God bless you all and thank you for checking in.

Love,

Barb

Field Trip

Jon and 2 others with their families went on a field trip to Drew's house. Drew is also a quadriplegic like Jon. He has use of his arms, can bend his elbows and use his wrists but does not have use of his fingers. He lives by himself. He has Aides come in the morning to get him up and in the evening to put him to bed. A nurse comes around 5:30. He works fulltime and drives a van. With the exception of his bedroom, his house looks like anyone elses. The modifications were made with things that you find in any home improvement store, not special orders or special equipment. His floor plan is open so he has no hallways. His kitchen counter and table are lowered to wheel chair height, he keeps his microwave on the table so he can access it. His cupboards have the slide out shelves for accessibility. He had to re-do the office floor as it was a sunken room. He leveled it out and put down a hardwood floor. His computer mouse is the ball and has 4 programmable pads. He is a photographer and has a studio in his house as well as going to an office. He uses a pencil in a hand brace to type. His bedroom door has not been modified and Jon was able to get through it!! He had about a 2 inch clearance. The bedroom has a lift attached to a track system on the ceiling. It is much less bulky than the hoyer lift at the center. The track system goes over his bed and continues over to the bathroom. The bathroom has a door on it but is open above the door for the lift to go on the track. The lift ends over a shower chair. He moved the wall out 1 foot. It is a sweet setup. The sink is outside the bathroom like you find in hotel rooms. It was like that to begin with. He lowered the height, set the sink back just a little so he would not get his shirt wet. The trap under the sink was adjusted so that he could get his chair all the way under. The closet doors were removed and a closet organizer system (from Lowes or Home Depot) put in. It was really nice and very nice of Drew to open his house for us to see.

While we were there, Jon's friend Mark called me. I knew he was in town but didn't think he was coming until Wednesday night. It was nice for him to see the changes, since he is in Defiance and I am down here he can help Mom with some changes that need to be made. Our Uncle Frank is in construction and helped re-do our cousin Marks space and our cousin Dean is in construction so we have several people to help. Of course Dad also has construction experience. We will still need people to help with the actual work as Uncle Frank is in Florida and Dean is in Marion. After we got back to the center, Jon and Mark were able to visit and catch up.

Thanks for checking in.

Blessings,

Barb

Visit to Neurosurgeon

I just read Barb and Jon's last post and can't believe they omitted the visit to the neurosurgeon last Thursday. Instead of being put on a stretcher Jon stayed in his power chair and rode in an ambulette. It gave me a chance to see what all has to be done when Jon rides in a van of his own and I can see that we will have to allow a good 15-20 minutes (if not more at the beginning) before we even start the car!

He had to be lifted out of the chair and onto the bed for the CAT scan by hand instead of a lift but could have the x-rays while still in the chair. The doctor was very pleased with both sets of pictures and also with the range of motion Jon has in his neck. I forgot to ask if he was cleared for having dental work done but I think that can be done by phone. While we were talking I showed Dr. Mendel how Jon's right wrist is tending to pull toward the left and he suggested taking it up with his rehab doctor. I responded we didn't have one but one of the other doctors checked the chart and said we had one assigned to us at Dodd Hall and we could refer back to her. We were only there for a week and I remember her introducing herself but forgot her specialty and didn't realize she could follow us wherever we went... good info to have!

Another bit of info I'm surprised they omitted was his visit to an optometrist. One visits the Center every 6 months or so and we were lucky enough to get Jon's named added to the list of patients he would see this trip. His prescription hasn't changed that much but his frames and lenses were in dreadful shape. They had survived the accident and we had kinda gotten them straightened out but the lenses had many scratches on them. He chose from the 12 or so sets of frames and they will be in in a couple of weeks.

Next on our list is dental work. They have a dentist who comes and "cleans" teeth but Jon's cleaning seemed cursory at best. He still needs to have a bridge made and a really thorough cleaning done. One step at a time, I guess.

Can't think of anything else. The weather in the Chesapeake Bay has cleared up, the sky is a gorgeous blue with just a few puffy clouds and we are headed to Annapolis. Hope all is well with you.

Jon Writes this Blog Entry

Hello all. Once again, I have to apologize for not posting sooner.

Jon has decided to write this one...
Barb's been busy but not as busy as I, who was caught speeding in the hallways. I was not given a ticket but was told that next time I "would lose my license"!. It was by one of the members of the "babe patrol" that works here. I have been basking in the sun enjoying the sunny days but not fond of the breezy, chilly days. I'm working hard in therapy, lifting weights, sitting up balancing myself.

Barb is getting so good at working with me that the aides consider her a fellow aide. They threatened "to fire her" when she's late or can't make it due to her other jobs.

Well enough for now. I've got to go. I'll let Barb throw in her two cents.

Love you all, Jon (written Sunday pm)

Mom is off enjoying time with her siblings on her brother's boat for 10 days. A well deserved rest, that happens to be over her birthday too (Aug 25). This weekend was full of visitors. On Friday, Greg came down for the weekend. Jon had been asking Angelique to print out the blog for him as we don't have internet there. She sent down a very nice binder with a table of contents and all the entries and comments from day one. It is 117 pages long!!! He started to read some of it but it is much longer than he anticipated. It was a bit overwhelming for him but he is very grateful for it. A friend of Jon and Greg's got married and the reception was Saturday. The Groom himself, Paul, and a friend came over before the reception and visited with Jon for a little while. Then Uncle Bill and Aunt Judy surprised us and stopped in. Uncle Bills' brother is in the hospital, please pray for him, and they decided to stop in to see Jon too! Aunt Judy just couldn't stop commenting on well Jon is doing and the improvement he has made since the last visit. Then cousin Dean stopped in on Sunday and spent a few hours with us.

Today, Monday, Jon started to read his visitors book from the first day of the accident. It has been awhile since he has looked at it from the beginning. He was amazed at the number of people that came to see him just in the first week! He will be doing a lot of reading between the blog and the visitors book.

Hope this finds everyone well. Blessings to all.

Barb

Making Great Strides

Mom & I (sister Barb) apologize. We didn't realize it had been a week since the last entry. We appreciate all of you that check in daily and numerous times throughout the week.

Jon has been doing very well. He decides that he is going to go for a cruise and announces "I'll be back". He goes to visit others or just cruises around the center. It is good to see this. In the beginning with the wheel chair, he would only drive in 1st gear (it has five). I had to coax him into 2nd. He went into 3rd and 4th on his own. Now he is driving inside in 5th gear!!!! One of the nurses was teasing him saying that they were going to give him a speeding ticket if he didn't slow down! I told him "Don't you think 5th is a little fast inside?" He replied "I only go in 5th when no one is in the hallway" and "I let ladies go first". Obviously he has become very comfortable in the chair.

Sunday morning, Jon & I had taken a walk - Jon showed me the grounds and I showed him the inside of the retirement side (I had taken some weight loss classes a few years ago in their conference room). He really liked the inside of the retirement side. He said the Dining Room was much larger than his, it had lots of seating, a pool table(!!) and a fireplace. He apparently liked it enough that he took Angelique over to see it. She had come down for a friends' sons birthday party and to visit with her Uncle J! She enjoyed her visit. She and I left at the same time - I went to a birthday party (last minute invite only a few blocks from Jon) and while I was there Jon called me as he was having difficulty breathing. He has been taking his cap off and coughing. This allows him to bring the mucous through the trach and out the end. He had 3 really good coughing sessions and got quite a bit out. He had also been suctioned after the coughing sessions. Nevertheless, he decided that he wanted me there with him. Sometimes just having someone close by makes you feel better, so I came back. After he was put to bed, he was suctioned again.

Jon would really like to get back to Defiance soon. He asked Matt about what the goals are for him to go home. He needs to: 1) Get off oxygen 2) Get rid of trach - which means no more suctioning. He needs to be able to get it up on his own 3) Get off the feeding tube 4) Get on a bowel maintenance program 5) be able to transfer from a bed (not his current one) to a regular wheel chair 6) use a regular wheel chair. I don't understand the regular wheel chair requirement. If he is going to use the electric chair then why does he need to learn from a regular wheelchair?? Maybe back up, I don't know. Mom just now informed me that the projected date for all these to be met is end of the year maybe as early as Thanksgiving. This is a little longer than I had hoped. He is still looking forward to going to Salt Fork this year for the Castanien Family Reunion.

Sunday evening had been his last suctioning until tonight so it has been 4 days without suctioning. We will restart the number of days starting with Thursday evening. To go 4 days is great!!!

On Tuesday, Matt informed Jon that Medicaid would no longer pay for 5 days of therapy. Each form of therapy (Physical, Occupational and Speech) would be 3 days a week. During the other 2 days, Jon is to do exercises on his own.

Carol came down Tuesday and went back this evening. She went with him to his therapy sessions, helped him get his meals ready to eat and spent time with him. They enjoyed their time together.

(Jon continues to work on keeping his balance while sitting on the edge of the table, having his leg muscles stretched and practicing the pattern of push and slide on the transfer board to get on and off the bench. In occupational therapy he has been working with weights. His arms are not evening strong so he is working with a two pound weight on one side and a one and a half pound on the other. He continues to work with the peg board--I slipped and started to write peg bored which may be more truth than a slip of the fingers....Barb read this to me last night and asked what else she should put and both of us needed to get to bed so I didn't even try to think of anything else but this morning I thought you might like this info, too. Marj)

Steady Progress

Jon had an opportunity to fend mostly for himself this last week-end. I took Barb back to Defiance Thursday evening. The Defiance theater group was putting on the play Nunsense and I decided to treat the Castanien gals to dinner and the play. We laughed ourselves silly. We didn't get back until late Sunday afternoon. We were a little concerned about Jon since he tends to stay relatively close to us when we are there but I had reports from several people that he got out and among the other residents and seemed to do just fine. The staff saw to it that his food was cut, etc. and his Dad spent more time with him also.

It has been a fairly quiet week. Jon continues to work hard in both physical therapy and occupational therapy maintaining his balance and gaining strength and muscles. The physical therapist measured the angles for when Jon turns his head. He can turn it to the right at a 54 degree angle and to the left at 50 degrees. The sputum culture finally came back and was read. It was decided that while the infection was not great it would be treated anyway with an antibiotic strong enough that it required a special IV called a PICC line. Some of you may recall from earlier days that he already had one but several weeks ago it got caught on his shirt when he was being undressed and it was pulled loose and had to be removed. It was replaced tonight after supper.

We did have two visitors this week. An "older man and a young kid," as described the receptionist, came to visit. It turned out to be a certain pilot and his son who just happen to be relatives. They stayed much longer than they intended and we were all kept in stitches. The concept of being "older" seemed incomprehensible to all of us.

Barb and Jon went on another excursion this afternoon to Kohl's to get a farewell card for one of the nurses who was leaving. She has done a super job in taking care of Jon and we will miss her and her good humor very much.

Thanks for checking in...we really appreciate it. Hope your summer weather has been enjoyable. We've talked Jon into spending more time outside and I can't help but think that it is in part responsible for his change in attitude.

Me & Uncle J

I had a nice visit with Uncle J on Sunday. I got there about 2:00 and Uncle Greg and his friend were still there. They stayed until about 3:00 and then it was just Uncle J and me. We talked a little, watched tv a little, and just hung out. I stayed around to help him with dinner. He ate almost all of his dinner and he fed himself the whole meal. I only had to help getting him situated with his tray and getting him drinks. It was nice for me to get to see the steps he has made! I don't get to go as often, or during the week, so I keep myself updated by the blog like everyone else! After dinner, Uncle J even said he would escort me out to my car. I think it is awesome now that he has a chair and can be mobile! I got a little worried about him going back inside after I left. I drove slow and saw him going in the front door but the door shut and knocked his wound vac off the back of his chair. I had just thrown my car in park, grabbed the keys and was running out to help him when I saw the receptionist coming to help him. All in all, it was a pretty nice visit!

Look Who's Browsing at Kohls!

There is a shopping center one short block from the Villages of Westerville and the physical therapist decided it was time that Jon and another gal in similar conditions should try their hand at maneuvering the aisles of a department store. Off they went early Friday afternoon. They had to go down an incline to get to the sidewalk and then cross the street and wheel down the sidewalk.

We discovered when we got to the door that there was only a button the size of a quarter to push for the door to open automatically. On the way out the button is right on the door frame which would be almost impossible for anyone in a wheelchair to get close enough to actually push it. For those whose handicap would be heart related etc. it would be adequate, but not for these two!

I am proud to say that they both handled their chairs like pros. Nothing even came close to being knocked over and with Jon’s oxygen tank hanging out so far behind him that is really something. They wandered through both the women’s and men’s departments, through the shoes and even stopped to read some of the greeting cards.


























They wound their way through a parking lot next to the rehabilitation center and Jon spotted two nifty motorbikes he needed to check out. When they got back to the center they drove their chairs over some grassy areas to get the feel of it. Some stretches were flat but they tried their hand at some small hills, too. It was a great day.

The only downside was the official notification that once again he has a urinary infection. That is not uncommon for quads they tell me and we are valiantly trying to get Jon to understand how important drinking lots of water is. I think we've found an article that he seems to think is convincing...I hope so. Thanks for checking in. Thanks for keeping us in your thoughts and prayers! Marj

Visitors

Jon has been quite busy. On Friday his Uncle Frank, and cousins Jan, Jill, Brynn and Devon came to visit. They were on their way to a family reunion on Saturday which Jon had hoped to be able to attend but we couldn't get the arrangements done on short notice so it was great to have them stop by for a few hours. I'm not sure Jon had ever seen Jill's daughter, Brynn, before and she reminds Barb and me of Jo Marie when she was at the same age. (I also thought she looked a lot like her Aunt Judy but think I was out voted.) Sunday my mother and sisters came to visit. Mother and Margaret Ann were able to stay till Monday and see some of Jon's physical therapy.

He has continued to work on supporting his upper body by making a triangle with his body and hands. Yesterday they were concentrating on retaining an upright position if he starts to lose his balance. His reaction times were good but needs to work on getting his hands in a good spot to support himself. The physical therapist gathered a group of 3 other patients who have similar injuries as Jon's and gave them a talk on how their injuries affected their prognosis. He included the staging of the muscles and it was interesting to learn that if a person can raise an extremity against gravity they have a good chance at recovering its use. Jon's also working with some weights in occupational therapy and is starting to get his upper arm muscles back.


His attitude has remained good for the last couple of weeks and he is working on learning everybody's name. It's nice to see him so outgoing again. Yesterday we spent almost a half an hour outside and I think daylight has made a difference also. He went for a long time asking that all the lights be turned off and since his bed isn't on the side next to the window he wasn't getting much light period. Now that he spends a lot of his time in the lounge which has several windows he's getting much more light.

On the down side he's just finished his antibiotics for a urinary tract infection and it looks like it's back again--or never really clearedup. We just can't get used to how much liquid he needs to keep this controlled!

Thanks for checking in and keeping Jon in your thoughts and prayers. We appreciate it. We especially thank Reibo for his frequent visits throughout the week...Jon really appreciates them.

New Firsts!

Saturday everyone traveled to Columbus to celebrate Jon's and his father's birthday. Jon was up early per the new schedule and I was afraid that by the time 2:30 came around he would be a whipped puppy. As it turned out he was still going strong early in the evening. Each day he has stayed up a little longer and yesterday he was in his chair for 14 hours!

He has a new tray that fits on the arms of the power chair which makes it much easier for him to feed himself. Last night, once I cut his meat for him he did most of the work. He would ask for a drink and then go back to eating. His friend, Mark, has been there about suppertime and has kept up a steady stream of conversation and encouragement which also helps.

There's been a welcome change in Jon's attitude. Up until last week Jon was satisfied with leaving the room only for therapy. I did occasionally get him outside for a short pass down the driveway and that was it. Now that he's up longer he's more like himself and stops by various rooms for conversation....that's more like the old Jon. Being in his room is quite cramped since it's hardly made for a chair as bulky as his (plus a room mate who also has a wheelchair) so he prefers to spend a lot of time in the lounge (which also has more comfortable seating for Mom and Dad and any other visitors!)

I arrived late yesterday so I came in the middle of physical therapy and missed occupational therapy altogether. Jon was working on sitting by himself on a bench. Matt was showing him how to position his arms so that the arms worked with his body to form a triangle. When Jon mentioned that he had already managed to sit by himself for 35 seconds Matt's competitiveness kicked right in...35 seconds, 40 seconds, right up to a full minute! They were both quite pleased, as was I.

Must get going, have got to see what I've missed so far this morning.....Thanks for checking in.

Another Year Rolls By

Jon had a pretty good day today. He was dressed early this morning so that the first shift could get him up in his chair to eat breakfast. While we love the bed because we don't have to be such worry warts about his being turned it is an absolute monster when it comes to eating in it. It's back is rather slippery and when he is pulled to the top of the bed and then raised to a sitting position it is like watching him slide into a swimming pool! His final position is not a good eating position and he still does a lot of coughing and choking while eating.

The word got out that it was his birthday and so a good number of people stopped by to wish him a good one. He did finally agree to going outside and staying there for 15 minutes instead of a quick pass from one door to the other. There is a nice shady area with a bench that we sat at and talked a bit.

Barb brought a delicious steak, sweet potatoes, baked potato and salad for his birthday supper. She bought one huge meal and split it 3 ways. No complaints (or coughing) during this meal!

Evening brought many phone calls from family and friends. A beautiful basket of flowers arrived earlier.

Many thanks to all of you for helping make this a good day for Jon. Tomorrow it is his Dad's turn -- Jon was his birthday present many years ago as he looked forward to having a boy. (He enjoyed the girls but they aren't the same!)

Birthday Boy

Today is Jon's Birthday. We are all going down to see him this Saturday. But, if you've got time, stop in or give him a call!

Thanks!

Up twice in one day!!

Well, Jon got up in his chair after all this morning. Rick, the chair rep, finally came today to do the pressure mapping. So Jon got up, ate breakfast in the chair and then went down to physical therapy. I wasn't there but according to Mom there weren't any areas they had to worry about, the seat is good! I was quite surprised to see him back up (for the second time today!) when I got there around 5. We went down to the activity room where Jon joined us in eating some pizza!! We went back to his room just to get a game and go back down again to the activity room. We played Password. When we started on the second card (there are 10 words per card and we each had our own), Jon said he was tired and wanted to go back to the room. He needed suctioning after he got back into bed.

Matt said that there is a young woman (around 26) that was shot in the neck and has the exact same injuries as Jon (complete injury at the C-6). She also has a 3 year old daughter to raise. So she has something to work toward. She does not have a power chair yet but when she does, Matt would like them to meet and have some therapy together. This will give someone else for Jon to talk to that has the same damage. Maybe when he sees her determination, he will get some too. Matt is also going to ask a man that has been a true quadriplegic for 40 years to come in and talk to Jon. He has to use his mouth in place of his hands, just like Joni Eareckson Tada (internationally known quadriplegic that has become a disabilities advocate.) Jon and I watched the movie on Joni (it's actually pronounced johnnie - her dad wanted a boy). Since her injuries were not the same he didn't seem to connect as well as I had hoped. He said "she's gone through a lot". With this young woman at the center, he should be able to relate. I think it will be very good for him to talk to someone that can truly understand what he is going through. We try but we can never truly understand.

Mom said he seemed to be in better spirits today. He went down to visit his old roommate Jack from CRSI that is at the this same facility. Jack's room is on the way to the therapy rooms so Jon tries to stop on the way down each day.

The goal is to get Jon up twice a day. I am trying to get him to go outside for the 4th of July fireworks in Westerville. His parking lot should have a relatively good view. He told me today that he hasn't done fireworks for a few years now. I think it would be good for him but I don't know if he will go for it or not.

Thanks for checking in. Please continue to keep Jon and the family in your prayers. Please add this young woman with the same injuries Jon has to your prayer list as well. Thank you and God bless you.

At a Snail’s Pace

June 28
Progress seems so slow when you are as close to Jon as we in Columbus are. On the plus side Jon is spending more time in his power chair. He gets dressed and into the chair by 1:00, just in time for lunch. At 2:00 he has physical therapy, usually followed by occupational therapy. He’s still working on stretching his neck and shoulder muscles. In occupational therapy he continues to work with pegs and squeezing play dough between his thumb and pointer finger. In addition we are still experimenting with different silverware and eating techniques. By evening his arms are getting pretty tired and shaky. If he coughs with his fork in his hand I try to keep a hand between his fork and chest so he won’t accidently stab himself! After therapy he’s free to roam the place and while my Mother was worried about how fast he might scoot around in his power chair she needn’t worry--the turtle would beat Jon in the proverbial race with the rabbit!

In speech therapy he is working on drawing conclusions--he played a game of “what if...? For example, what would happen if every family in the United States had 10 children? Half a dozen conclusions come readily to my mind!

Jon is still fighting several infections and I guess I need to remember that those things slow a person down. I’ve been really on him for not wanting to eat as much as he should. He thinks he has been exerting himself quite a bit and I suppose if one considers how digestive tract infections can slow a normal person down then he probably is working hard. A wound vac is back on his bedsore--a disappointment to Barb and me since the new bed has such great promise even if one only believes half of what sales reps say.

Wed. July 1
Jon had a really rough day yesterday. His morning blood pressure was 132/83 and should have been a red flag for the staff. I'm not sure exactly sure when it was taken but not at a time when his Dad was there and it could be written down. I don't recall it being high at physical therapy but later in the day he had problems with his catheter being blocked. It was removed but nothing done for about 4 or so hours. Once it was replaced(for the second time in a week) there was still a lot of sediment in the tube and his blood pressure was at 134/65...still high with red flags flying. We followed the rule about sitting up and after a half hour it went back to 116 over 60 something. So we put away the word search we had just completed I laid him back down and said goodnight. (Blood pressure has a habit of going down when sitting in an upright position so when it is more than 20 points higher than normal he has to follow some protecol for lowering it. We had already checked the urine problem and the bowel problem couldn't be dealt with at the moment.)

He had a rough night from what his dad said a few minutes ago and he doesn't really want to get out of bed. That's a big mistake so I'm off to exert some maternal pressure! He's been having problems swallowing and can't really get to a 90 degree upright position and has been having some problems with coughing during eating. The theory being if he was up in the morning he could be in the chair for both breakfast and lunch to see if that was beneficial.

He didnt fall!!

Jon's physical therapy went well today. The Physical Therapist Assistant taking over for Matt came down and the 3 of us (PTA, Aide, Barb) got him into the chair okay with no incidents. Jon then ate lunch. It was an okay lunch. He didn't eat as much as I wanted but it was half way decent. In physical therapy she worked his shoulders and neck!! He had his brace off when I got there around 9:00. He let me put it on around 11:00 and then we took it back off for his therapy. I have friends at the nursing center and the husband, Bill, came down. He told Jon not to let the PTA give him a hard time. That she can be hard core. Jon replied "She's been pretty hard on me, but it's okay, she's easy on the eyes." When she heard that she turned beet red. She said she has 10 shades. One is normal, and that she was probably a ten now. She is very cute.

He was pretty wiped out after getting back into bed. He was up in the chair for 3 hours.

His friend Mark and his sister Jody came up to see him tonight. Jon was in a good mood and seemed to enjoy them. He got a little sad at the end of the day. I'm not sure what happened but by the end of the day, Jon was getting teary eyed. When Mom asked if he was okay, he said no but didn't want to talk about it.

Overall it was a pretty good day.

God bless you and thank you for checking in.

Building Blocks of Success

As part of his therapy, Uncle J works with blocks as shown in the picture on the left. He works on picking them up and putting them in the peg holes. I haven't been there to see him do much therapy since I am there on the weekends, but from what I gather, he has been doing fairly well.

"Block" on, Uncle J!

Slow weekend

It's been a busy time for me (Barb) and unfortunately Jon has not had visitors this weekend. Friday night I watched children at church for a spanish speaking group. Saturday morning I stopped in and had Jon sign 3 cards! He signed his name in cursive. He did a good job. :) One for Dad for Father's Day, one for nephew Joshua (his birthday was the 18th and he turned 20!!) and one for niece Angelique (her birthday is the 25th and I will let her tell her own age now). He had the front of his neck brace off when I got there. The back was still on and was soaked. I took it off, washed the neck pads and showed the nurse how to put it back on. We had a cookout for their birthdays and for Father's Day in Defiance. I did not get back to see Jon again last night until 8:20. He said it was quiet all day. He still had the neck brace off so I put it back on for the night.

Today, Dad got there around noon. I went to second service and then to a graduation party and worked for about 2 hours doing payroll (something my workers might appreciate) and catching up on other things at work. Aunt Judy and Uncle Bill stopped by on their way back home from Rhode Island. Jon said he enjoyed their visit. Dad stayed until just after 5:30, so he spent a good portion of his day with Jon which is nice for Father's day. I didn't get there until 7:20pm :( I found that he had his neck brace off again. When I asked if he had it off all day, he said "You can put it back on" so I am assuming it was off all day. The instructions were for a few hours at a time. With the goal of having it off permanently in six weeks. We talked for a little bit and then we did a word search. He is good at finding them and seems to enjoy it. I waited until his next check which should have been done around 9:15. I'm glad I stayed. His C-Diff seems to be coming back. I noticed "the odor". So I mentioned it to the aide and she said the last 3 checks he has had diarrhea. She said this morning he was solid. Not good signs. I told the nurse and she is calling the doctor to get an order for a stool sample which won't be taken until tomorrow since it is so late tonight. We still have no appointment for the colostemy. It is taking alot longer than I anticipated. Hopefully Jon won't change his mind before they get around to it. I left at 10:00 pm.

Tomorrow will be the first day of physical therapy without Matt. He is on vacation and one of his assistants will be working with Jon. It will also be the first day of getting into the chair without Matt. All last week, Matt worked with Mom or I on getting Jon into the chair using a lift. He wanted us to know so that we can tell the aides how to do it. Some of them don't really like it when we try to tell them about Jon as they think they already know it. Spinal cord injuries are different and they don't realize how different they can be. The lift itself is the same but putting Jon into the chair and making sure he doesn't fall out is different than what they are used to so we will see how they do with it. I told Matt to show the aides himself and he said he would rather show us and for us to tell them. I said "Okay". The foot rests stick out too far for the lift to get as close as it should, so when the lift lowers him, Jon sits on the edge of the seat. We have to hold onto him and recline the chair in order to get him all the way back into the seat. Matt's biggest concern is that if Jon's muscles go into a spasm as he is sitting on the edge of the seat that he could fall out. Thankfully Jon does not have many leg spasms and is only on the edge for less than a minute but it is still a real possibility. Please pray for Jon and the transfers. He will get into the chair around 1:00 and back out around 3:00pm. He will also be able to eat lunch in the chair which will really help with his swallowing and feeding himself since he will be up at a true 90 degrees.

Jon's friend Mark is working down here again this week and so he said he would stop by and see Jon in the evenings. Jon is looking forward to seeing him tomorrow.

Thank you for checking in.

"O frabjous day! Callooh! Callay!"

This is a quote from a poem about slaying a dragon by Lewis Carroll of Alice in Wonderland fame:

"And, has thou slain the Jabberwock?
Come to my arms, my beamish boy!
O frabjous day! Callooh! Callay!'
He chortled in his joy.

Jon's dragon these last 8 months has been his head gear. First, the halo and then the Miami J neck brace. We spent a total of 4 and a half hours at OSU getting Cat scans, consulting with the doctor and then back again for x-rays, that were initially ordered but not communicated to the EMTs. Dr. Mendell looked at them and pronounced the spine healed and stable. Only one hitch; what looks like the major point of impact at the 5 T vertebrae looks almost like the spine is making a major turn toward the front of his body. The doctor didn't think that the spine was being pulled toward either side of his body but he didn't have any other explanation why he tilts so in bed. It may just be due to poor trunk control (my guess, not his.) He is allowed to remove the brace gradually. At first, when he's not very active and after he has built up some strength through physical therapy he can be without it for longer periods of time. We go back in six weeks for the final word. Dr. Mendell also had no idea why either of the two operations involving the spine that were suggested several months ago would even be considered. Redoing the back in major surgery seems like a step backward to him and he never heard of stretching the muscles by weakening them--perhaps I just didn't explain it well. Although he was very surprised they did not do surgery in the very beginning, before everything had a chance to heal.

Other news: he has major constipation and a urinary tract infection. X rays show there is no other problem than constipation to make his tummy swell so that's good news.

He has been in the chair almost every day and is gaining confidence in his driving. Matt, the physical therapist, is changing the handle from a joy stick to something that will look a little like a goal post. The pressure mapping has still not been done due to the chair reps computer program not working. Although the pressure mapping will allow Jon to sit in the chair for longer periods of time and not endanger the healing process of his bedsore, he has a reclining feature as well to help relieve the pressure of sitting upright. Matt has Jon reclining every 20 minutes for at least 30 seconds. Jon usually reclines for more than that.

The special bed has not gone back yet and we think that we may have some valid reasons for continuing using it. We just have to convince the doctor at the Village that a paralyzed person with arthritis of the spine, in addition to his blown vertebrae, needs to have a bed which is healing and prevents further sores from developing.

Jon has had the pleasure of a good friend from Defiance dropping by three evenings this week. He wasn't feeling great the third day but hopefully that won't interfere with future visits. Thanks so much Mark for stopping by. We really appreciate it.

To see the whole poem go to: www.jabberwocky.com/carroll/jabber/jabberwocky/html The poem has been set to music and we had a great time singing it in my high school choir days.

More surprise visitors

Jon did not need suctioning today until we were getting ready for therapy. He needed suctioning as we were getting him dressed and then an hour later. He ended up being suctioned 4 times in 6 hours. He is coughing alot up on his own but still has alot being suctioned out. He was in the wheel chair for 2 hours again. They were supposed to "pressure map" his seat in order to allow him to sit up in the chair for more than 2 hours. The chair rep got his days mixed up and won't be out until tomorrow. Hopefully starting tomorrow we can get him up a little longer. I will let you know tomorrow what "pressure mapping" is exactly. My understanding is that they use the computer to find out where his pressure points are and then adjust the seat accordingly.

Yesterday among the human visitors we also had a rabbit visitor come in. A lady that lives close by has 4 rabbits and brought in her Fleming giant. He was 40 pounds!! I had her take him into Jon's room so he could see him and Jon flipped out. He is the largest either of us has seen before. Today she brought in it's mate. She is only 17 pounds! Still a rather large rabbit but not nearly the size of Big Bun (short for Big Bunny). Tomorrow she will bring in the other 2 they have. She doesn't know anyone at the center, rabbits can also be therapeutic and didn't know if anyone would enjoy seeing them. They have been a hit with everyone that has seen them. Jon was able to pet the one today.

While Jon was eating dinner (rather late tonight - arrived at 6:50), Greg called and wanted to know where I was. I said with Jon. He said good, go to the front desk. Mark, a friend of Jon's was in town. He has been traveling back and forth daily from Defiance to Columbus for work. He was finally given a hotel room instead of traveling 5 1/2-6 hours round trip. He surprised both of us. He will be in town until Thursday for work so we will get to see him for alittle in the evenings. It lifted Jon's spirits.

Thanks for checking in. Mom and Carol will be down tomorrow.

A Visitor filled weekend

Friday Jon was in the electric wheel chair again for 2 hours. After physical therapy was over, we went on a ride around the inside of the center and then took a short trip outside. He was doing so well on his oxygen saturation that the PT took him from 4 liters to 3 liters. He was still satting at 95 so we lowered it to 2 liters for a while. When we went outside, we took it back up to 3 liters and checked again when we came back in and it was still 95 so we lowered to 2 again. I know this doesn't make sense to most of you, the short of it is that he is able to handle less oxygen. That is one of the goals is to get him off the oxygen so it was a good thing. We took it back to 4 liters when he was put back in bed. After Jon got back in bed I read the fact sheet they out for "today in history". Jon listened to the facts okay. On the back was a word search. I thought it would be good mental exercise so I asked him if he wanted to find some. After the 3rd one he said "I'm done". I found one and showed him and he started again. He ended up finding them all. For about 3 of them I would give hints "I found panda. It starts in the 3rd row" or something similar and he would find them. He seemed to enjoy it. I went down to the activity room and asked if they had some word searchs. She said yes and gave me xerox pages of 7 different puzzles including a word scramble.

Friday evening Greg and a friend Shawn came down to spend the weekend. Jon was more communicative this weekend than he was last weekend. He was not his old self but definitely improved from last weekend.

Saturday I asked Greg and Shawn to do another word search with him. He did very well and again seemed to enjoy it. Jon was interactive with both. Jon had a rough afternoon with his breathing. He asked to be suctioned 4 times in about 3 1/2 hours. That is alot in a short time period. We used the "pickle" to help break it up more and it worked. They left about 9:00pm. I went back around 10:15 to help with the last check before the Aides shift change and then stayed for the first check on night shift. I left at 12:38 am. This night nurse is very nice and helps the aide in checking Jon so I don't have to worry about whether he will be checked and if it is on time or not.

Sunday I went in around 10:15am (so much for 8:15- my intended time). Greg and Shawn came in around 11:15 and I went to to the 2nd service at church. Dad had gone to first and so he got there around noon. During service our Uncle Bill and Aunt Judy called. I said I would call back around 1:00 when service was over. Little did I know that they were coming to Columbus as they were flying out of Port Columbus and they wanted directions to Jons'. It all worked out well though as I called them around 1:15 and they were just at Polaris. I walked them through directions on how to get to Jons and I literally got there about 1 minute before them. My mom is in Traverse City for my cousin's sons high school graduation and she called while I was directing our aunt and uncle so I called her back. As I walked into Jon's room, I was on the phone with relatives from Traverse City and Aunt Judy and Uncle Bill behind me. Greg, Dad and Shawn were already there. So Jon went from famine to feasting on visitors. Jon talked to about 5 people on the phone and then visited with Aunt Judy and Uncle Bill. After everyone left I let Jon rest and I went down to the lounge to take a nap myself. Later Jon did a word scramble on different birds. Again, he seemed to enjoy the mental challenge. We worked on exercising his hands and legs. Before I left him for the night, he said he enjoyed the weekend and all the visitors today.

It is my bedtime so I bid you all a good night and thank you for checking in. Please continue praying. If anyone would like to call and talk to Jon you are welcome to call me talk to him. If it is not a good time we will call you back. My number is 614-403-6834. I am off for 10 weeks from my primary job so you can call during the day. He is usually in therapy from 1 to 3, other than that our days are pretty open. Thanks again.

A Futile Trip

Went shopping for some clothes for Jon and so I arrived on the late side again today. The nurse told me that Jon's feeding tube was clogged, again, only this time they didn't seem to be able to get it unclogged. Clogging has been a problem for the last couple of months. They had decided that this time they would send Jon to the hospital to have the tube replaced. I kept bugging her about when would he be leaving and got some answer about being unarble to reach the doctor or not having time, or whatever. Finally about 5:30--just before supper--she announced the ambulance would be there at 6. He ate a medium breakfast, next to nothing for lunch and now no supper! Not so sure how much difference it would have made but still.

On the way over the ambulance driver commented about the time difference between OSU and St. Anne's emergency room visits. OSU: average time from start to finish 6 hours; St Anne's: 3 hours. Because they had trouble getting ahold of the place he's staying they couldn't call the ambulance to send him back??? Anyway it was after 10 before arriving "home" and around 11 before he was settled in and ran out of requests.

To make a long story short there are two different kinds of installations for PEGs and we didn't know which it was. An ultra sound around his tummy was no help at all. After much rummaging for a tube that might fit it was decided that since they didn't know for sure just which kind of attachment they were making that maybe it would be best to see a gastroentestinal doc and start from scratch.