05-09-2009
0649 hours
Well Wednesday last was a busy day for both Dar and I. Dar had a very busy schedule of therapies and I found myself again putting out fires.
Dar started off her day with a visit from Dr. Doherty. Dr. D told us that Dar would be headed to Marin General this coming Wednesday for a special CT scan of her throat. Specifically the trach. We now suspect that Dar may be suffering from “trachiomalacia. Best described, this is a condition where the windpipe (trach) collapses under negative pressure. If you recall we have tried to remove the trach on 2 other separate occasions. Each time Dar does ok for about 2 minutes and then her O2 sats drop rapidly. This means that the oxygen in her blood drops very low. We have seen a specialist about this issue and he is not able to see any problems.
Another way to describe this problem is to picture breathing thru a straw. When the straw is open at one end you don’t have a problem breathing. Close the open end and take a deep breath, what happens, the walls of the straw collapse. This is what we think is happening to Dar. If this is the case it may lend evidence to what really happened back in December.
Should this condition be proved, Dar would have surgery to repair the problem with a “stent”. Dr. Corry at the SF University Hospital would do this procedure. Dr D has already got Dr Corry onboard.
Dar was approved for new leg splints that will help reduce the “tone”, “spasticity” in her legs. The splints are from Dyna Splints and are state of the art. Dana from Dyna Splints schooled me in their application and theory. I then gave a workshop to the staff on how to put them on Dar. Dar will wear these splints for a two-hour period and then have a rest period of two hours.
The splints are totally adjustable and over time they will hopefully bring Dar’s legs back down to a flat position while lying on her back and she will be able to have her full range of motion again. Dana is very confident we will achieve this as Dar’s “tone” has decreased dramatically over the past week of so. Dar does not seem to find them uncomfortable and does not mind wearing them.
Dar was to resume her “puree” food as of Thursday. She was very excited about this.
As for the fires that I was busily putting out, it seems that Anthem Blue Cross has the power to say when Dar should be moved from Kentfield. Evidently there is someone sitting in a chair playing “armchair quarterback” deciding when or if Dar is making the amount of progress that would allow her to stay at Kentfield.
As I have been told there are 3 criterions for Dar to remain at Kentfield.
1. Medical necessity
2. The need to be seen by at least one doctor on a daily basis.
3. Progress
Now given that Dar continues to be seen by both Dr D and Dr Waters daily, she is making wonderful progress that leaves but one area left.
You think the fact that we have not been able to remove the trach and Dar might be suffering for trachiomalacia might give the armchair quarterback a clue that there is still medical necessity for Dar to remain where she is. Duh.
It really ticks me off that these insurance companies have this kind of power. Believe me its true. This is not the first time we have had this happen since Dar came to Kentfield. Back on Feb 20th they tried to. Dr. D stepped right up and fought for her patient and between the two of us we got Dar reinstated. Not until the 27th mind you but we got it done. 4 days later Dar started scaling hurdles in her recovery. Now, here we are again doing the same thing.
This is a common occurrence; I have seen it happen to other patients since we have been here. It is happening to another patient and family we have come to care about even now.
Dar has been cleared to stay till Monday but Dr Waters assures me that nothing will happen as Dar has her appointment on Wednesday.
Let me make clear that I am totally aware and accept that at some time Dar will graduate to the next facility, the next level of care, that is what we want. We want Dar to go to the next facility where she can continue her progress/continue her therapy, but she must be STABLE. Acute medical attention not needed.
0649 hours
Well Wednesday last was a busy day for both Dar and I. Dar had a very busy schedule of therapies and I found myself again putting out fires.
Dar started off her day with a visit from Dr. Doherty. Dr. D told us that Dar would be headed to Marin General this coming Wednesday for a special CT scan of her throat. Specifically the trach. We now suspect that Dar may be suffering from “trachiomalacia. Best described, this is a condition where the windpipe (trach) collapses under negative pressure. If you recall we have tried to remove the trach on 2 other separate occasions. Each time Dar does ok for about 2 minutes and then her O2 sats drop rapidly. This means that the oxygen in her blood drops very low. We have seen a specialist about this issue and he is not able to see any problems.
Another way to describe this problem is to picture breathing thru a straw. When the straw is open at one end you don’t have a problem breathing. Close the open end and take a deep breath, what happens, the walls of the straw collapse. This is what we think is happening to Dar. If this is the case it may lend evidence to what really happened back in December.
Should this condition be proved, Dar would have surgery to repair the problem with a “stent”. Dr. Corry at the SF University Hospital would do this procedure. Dr D has already got Dr Corry onboard.
Dar was approved for new leg splints that will help reduce the “tone”, “spasticity” in her legs. The splints are from Dyna Splints and are state of the art. Dana from Dyna Splints schooled me in their application and theory. I then gave a workshop to the staff on how to put them on Dar. Dar will wear these splints for a two-hour period and then have a rest period of two hours.
The splints are totally adjustable and over time they will hopefully bring Dar’s legs back down to a flat position while lying on her back and she will be able to have her full range of motion again. Dana is very confident we will achieve this as Dar’s “tone” has decreased dramatically over the past week of so. Dar does not seem to find them uncomfortable and does not mind wearing them.
Dar was to resume her “puree” food as of Thursday. She was very excited about this.
As for the fires that I was busily putting out, it seems that Anthem Blue Cross has the power to say when Dar should be moved from Kentfield. Evidently there is someone sitting in a chair playing “armchair quarterback” deciding when or if Dar is making the amount of progress that would allow her to stay at Kentfield.
As I have been told there are 3 criterions for Dar to remain at Kentfield.
1. Medical necessity
2. The need to be seen by at least one doctor on a daily basis.
3. Progress
Now given that Dar continues to be seen by both Dr D and Dr Waters daily, she is making wonderful progress that leaves but one area left.
You think the fact that we have not been able to remove the trach and Dar might be suffering for trachiomalacia might give the armchair quarterback a clue that there is still medical necessity for Dar to remain where she is. Duh.
It really ticks me off that these insurance companies have this kind of power. Believe me its true. This is not the first time we have had this happen since Dar came to Kentfield. Back on Feb 20th they tried to. Dr. D stepped right up and fought for her patient and between the two of us we got Dar reinstated. Not until the 27th mind you but we got it done. 4 days later Dar started scaling hurdles in her recovery. Now, here we are again doing the same thing.
This is a common occurrence; I have seen it happen to other patients since we have been here. It is happening to another patient and family we have come to care about even now.
Dar has been cleared to stay till Monday but Dr Waters assures me that nothing will happen as Dar has her appointment on Wednesday.
Let me make clear that I am totally aware and accept that at some time Dar will graduate to the next facility, the next level of care, that is what we want. We want Dar to go to the next facility where she can continue her progress/continue her therapy, but she must be STABLE. Acute medical attention not needed.
Also let me make clear, that as Dar’s primary advocate, there is nothing I won’t do to ensure she is cared for in the best possible manner and placement. I will leave no stone unturned, I will facilitate any and all means of support, including legal actions, media, complaints to insurance commissions and even political officials that I know personally. I will even ask for you as readers to share your voice. I hope I can count on you.
That is a little of what I dealt with on Wednesday.
Thursday Dar went to Marin General to have a CT Scan of her abdomen. Dr Waters is being cautious about the frequency of Dar’s urinary infections. She wants to rule out and organ problems. Results are not in as yet.
Well it is about time for me to go see Dar and spend the day with her. I will talk to you all again later in the weekend and bring you up to speed on her continuing Recovery.
Thank you all for your prayers, please continue.
Love to all,
Dar/Danny
Post update,
Before removing Dar's new splints about 10:00 she told me that she could move her legs when lying flat on the bed. Folks, the girl was telling it straight. After I took the splints off I asked her to show me what she could do. First the right leg, which still shows the most "tone", she bent at the knee and moved her leg upward, not huge but huge that her brain told her leg to do something and it responded. The left leg, which has much less tone followed in the same manner. So exciting to see. Previously Dar was not coming close to putting her legs flat on the bed, now she is resting the left and almost the right on the bed. That is what the pros call "zero". Dar is getting real close with both legs. Great news, the "pros" do not think we will have any trouble getting her to Zero.
Thanks again folks, enjoy this beautiful day.
All our love,
Dar/Danny
2 comments:
Danny, Hang in there. It will all work out for good. We are praying about this.
Danny and Dar, So great to hear about all of the improvements. Hang in there! It will all come together for you. Whis I could visit you both. May be after the Barbecue. Love you both. Praying for both of you. Ann
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