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.
Wednesday, September 30, 2009
Saturday, September 26, 2009
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.
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.
Thursday, September 17, 2009
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.
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.
Tuesday, September 8, 2009
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.
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.
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