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.