Spring Can't Come Soon Enough

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

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

Geting Settled In

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

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

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

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

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

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

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

I'm so Lonesome, I Could Cry

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

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

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

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

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

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

Have a good weekend.

The Week that Was

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

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

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

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

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

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

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

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

Back one more step

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

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

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

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

Many blessings, Barb

Back to Square Two

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

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

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

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

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

More snow... Bah hum bug!!

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

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