"Happy Mothers Day"

05-10-2009
0400 Hours

Happy Mother’s Day Mom.

Dar asked me to wish you a very special day today and that she is looking forward to seeing you and dad next weekend.

Darlene and I both would like to wish all of our Dar’s Recovery moms a very Happy Mothers Day. We both thank you for your support and prayers and hope that your special day will be a day of happiness and joy.

A very special wish of joy and happiness goes out to our immediate Kentfield family, Happy Moms day to the Stewart’s, Murphy’s and the Spitzer’s. We love you all.

To the Ken Reimers family, we continue to support and pray for you.

Dar had a great day yesterday; back on her soft food diet she is looking forward to having more and more of a regular diet. We will be working toward this during the week ahead.

After physical therapy yesterday we took off on our walk to Ross, Dr Roebken made comment later that Dar looked like a streak of lightning headed for the hills. If he only knew how correct he is. Dar wants out of that room, out of that bed and out of that building as much and as fast as she can.

We were out for a couple hours together before we had to return for more therapy. The fist of the two remaining involved eating ice cream and drinking V-8 juice. The ice cream had the blue tint again to ensure swallowing, (remember, has had no food for 10 days) and Dar was 100 percent right on. All good in the hood as she says. You could tell she enjoyed her return to “real” food, had a grin from ear to ear.

Lastly, her final therapy is the one that probably causes her the most pain and discomfort. O/T came in to work with her arms, wrists, shoulders, neck and hands. The hands are not as bad as they once were but the shoulders and upper arms are really difficult. We hope the tone will decrease soon. Dar’s “peck muscles” are really tight, and causing much pain. The trooper Dar is, she fights the pain and works hard at following the instructions of the therapist

By the end of the day Dar was ready for a nap, as was I.

Around 7:30 Dar dropped off to sleep and I quietly slipped away to return home. This week will be busy, lots of things to do, lots of things to be prepared for, school getting close to the end, students looking forward to summer, crazy time of the year.

Please be praying for Dar on Wednesday, her field trip to Marin General.

Well, I find myself just a little scattered in the writing dept this morning so I will wish all the moms one more wish for a wonderful day today, and thank you all for your prayers and support for Dar and her Recovery.

To my mom in heaven, “thanks mom, you raised me right, you done good, love ya”

Please, please, please, have a wonderful day everyone and thank you from the bottom of our hearts, we love you.

Dar/Danny

"FIELD TRIPS FOR DAR"

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.

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

" Maverick and Mom at the Fredrick Allen Park"

05-02-2009

1406 Hours

The photo to the left was taken on a recent wheelchair quad ride to the little hamlet of "Ross".

Darlene and John Murphy took a stroll to this little community park at the end of the pathway with Maverick in tow. Dar loves to be out in her chair as it reminds her of riding her quad. The rougher the path got the more Dar laughed and enjoyed herself.

Not wanting to be left out Dar wanted Mav in her lap so he could have his picture taken with mom. You can see by the photo both mom and Mav are quite happy.

Today finds Dar in great spirits and using her speaking valve again she is building up her lungs and speaking muscles after having had to lay off for more than a week.

We still have not had contact between Dr. D and Dr. Shapiro regarding Dar's dificulty with the "button". Hopefully both doctors will be in touch soon.

This morning Dr. Waters saw Dar and I think there is something the two of them share that must be pretty special. Neither of them will share with me what it is but I am pretty sure there are some secrets they are keeping to themselves. The two of them laugh and there is alot of whispering going on. Dar is not about to give up any information to me, so I will just enjoy that the two of them have something special.

Dr. Waters watched as dar and I played our game of Simon Says and thought it was a great tool to use with Dar as she continues to process information and follow instructions. I won the first couple of games but later on Dar was winning quite regularly.

Dar has such a special spirit that you can't help but participate in her conversations as she works very hard to communicate with those folks around her.

My difficulty at this time is related to her discomfort and her ablity now to communicate with us. It is heart wrenching to know that something is bothering her and she is uncomfortable and while trying to communicate this to us I can't pinpoint it immediatley. It usually takes several questions before I am able to find the issue and then take the appropriate steps to correct it.

I feel like I've been hit by a semi truck at the end of the day. Although it is emotional for me, I can only thank God that we are seeing this continuing progress from Dar. She has come so far and is making such good progress.

Dr. Waters still plans on haveing a specialist look at Dar to rule out any possible problems regarding the frequency of Dar's UTI infections. Both Dr. D and Dr. Waters are very pro active when it comes to infections and heading them off at the pass. Probably more because of having had the "Cath" are they taking this proactive step. Dar's hydration is very good.

As I type this blog Dar is resting very peacefully with her "trach cuff" deflated and her speaking valve on. Her numbers are great and she looks ever so peacefull.

We are both looking forward to her being able to have some of her "favorite regular food" very soon. Only haveing the speaking valve on since yesterday, Dr. D wants to make sure that all is in order for Dar to start having her special food.

I will return home later tonight to pay those nasty bills that seem to come at the beginning of every month.

Always seems to be something to do.

I thank those of you that have taken a moment to leave a special comment for Dar and I. It really means a great deal to me to find them at the end of the "posts".

I have had several comments about the poem I posted the other day. Thank you for sharing your thoughts.

Remember, you can find the comment link at the bottom of each post. All you have to do is sign in as "annoyn" write your comment, verify the security letters and then hit submit. Thats all there is to it, and they do mean alot to me.

Well, I hope you all enjoy your weekend and please, please remember, Dar and I could not get through this without your love and support.

John Murphy is doing well in his new "digs" and the family is looking forward to his return home.

Rye Spitzer continues to improve and is now wearing his speaking valve too. We continue to uplift his family and friends as they too travel this road to recovery.

Have a great weekend everyone, we love you all.

Dar/Danny

"Diane and Roger visit Dar"

04-30-2009

0433 hours





Driving from Salem Oregon earlier in the week, sister Diane and husband Roger stopped by Kentfield on there way home. They were able to spend a fun filled day of laughter, stories and all around silliness with Dar.





This was Roger's first visit to see Dar since she left Oroville Hospital back in January, Diane has not seen Dar since Valentines Day. It was great to have Dar in good spirits and happy to see sister and her husband.



Diane and Roger are going to stop by this morning before heading back home.



Dar's visit to see Dr. Shapiro turned out to be somewhat confusing to Dr. Doherty. It seems that there is no reason that Dar should be having trouble with the "button". Dr. Doherty has some ideas that she is pursuing but will talk with Dr. Shapiro further and hopefully get some more specific answers to her questions.



Although we did not get a definitive answer or a clear cut direction to go Dr. Doherty believes that Dar should be using her speaking valve and eating her "puree" food by the weekend. Dar will have another chest x-ray today and given a clear report Dar should be off and running as she was before. She really misses not being able to hear her voice and the ability to communicate with those folks that work with her.



Dar had a busy day of therapys, but we were all able to go sit on the patio and visit for about an hour or so. The weather was a little bit cool but Dar was very content to be outside with a blanket to keep her warm and feel the sun on her face.



I am looking forward to hearing from Dr. Doherty, hopefully before the weekend, regarding her conversation with Dr. Shapiro.



Must get ready for work, put the clothes in the dryer, feed the dog and get ready for the day. As things come to mind during the day I may add to the post later today.



Please continue to pray for Dar and as I have said many times before and you will hear many more times in the future, thank you for your support and prayers. We are thankfull to you all.



Talk later, in closing I am enclosing an email I received yesterday that I really needed to hear. I hope you enjoy it and think about it during your day today.






How to Dance in the Rain


It was a busy morning, about 8:30 , when an elderly gentleman in his 80s arrived to have stitches removed from his thumb. He said he was in a hurry as he had an appointment at 9:00 am .


I took his vital signs and had him take a seat, knowing it would be over an hour before someone would to able to see him. I saw him looking at his watch and decided, since I was not busy with another patient, I would evaluate his wound. On exam, it was well healed, so I talked to one of the doctors, got the needed supplies to remove his sutures and redress his wound.


While taking care of his wound, I asked him if he had another doctor's appointment this morning, as he was in such a hurry.


The gentleman told me no, that he needed to go to the nursing home to eat breakfast with his wife. I inquired as to her health.


He told me that she had been there for a while and that she was a victim of Alzheimer's Disease.


As we talked, I asked if she would be upset if he was a bit late.


He replied that she no longer knew who he was, that she had not recognized him in five years now.


I was surprised, and asked him, 'And you still go every morning, even though she doesn't know who you are?'


He smiled
as he patted my hand and said,
'She doesn't know me,
but I still know who she is.'


I had to hold back tears as he left, I had goose bumps on my arm, and thought,
'That is the kind of love
I want in my life.'
True love is neither
physical, nor romantic.


True love is an acceptance of all that is, has been, will be, and will not be.


With all the jokes and fun that are in e-mails, sometimes there is one that comes along that has an important message. This one I thoughtI could share with you.


The happiest people don't necessarily have the best of everything;
they just make the best
of everything they have.
I hope you share this with someone you care about.
I just did.


'Life isn't about how to survive the storm,
but how to dance in the rain.

" On the Road Again "

04-26-09
0541 Hours

A song made famous by Willie Nelson, Dar is back "on the road again"

Yesterday I found Dar to be back to her "perky" self. Eyes open, big smile, full of laughter but unfortunately not able to use her speaking valve.

Running a slight fevor during the week and x-rays showing a bit of congestion in the right lung Dr. D decided to error on the side of caution and re-inflate the "cuff" and not use the "speaking valve" until Dar sees Dr. Shapiro on Tuesday. This caution eliminates the possibility of Dar "asperating" anything into her lungs. Dr. D also started Dar on an antibiotic in pill form given through her "g tube".

Still learning about this blackberry phone I was not receiving emails yesterday or if I did get one it was immediatley gone upon closing. I think I have since found the reason why. I had sent Dr. D an email early yesterday when I learned that Dar could not use her speaking valve. When I returned home late yesterday Dr. D had answered with Dar's update. Not knowing exactly what was going on made for a somewhat worrisome day with Dar.

We were still able to do all the things she enjoys during the day, ie "wheel chair quad ride", stroll to "Ross", play with Mav, play her new favorite game "simon says"(works on different tasks and practices following instructions), her "win" rate is going up. Just was not quite the same as we could not enjoy her contagious laughter that everyone has come to enjoy and love. Was not able to give her ice cream or juice either.

The "tone" in her legs, hips, knees, shoulders and hands seems to have decreased in the last few days also. I was able to put her hand splints on with minimal complaint from Dar. When lying on her back we have been really striving to get Dar's legs totally flat on the bed without a pillow under her knees, (pillow promotes flexion we don't want), moving slowly and talking to Dar I am able to get her legs almost flat on the bed. Dar wears leg splints for two hours on two off during the day. Same with the hand splints. In the last few days splints have been able to be put on relatively easy. Dar being the trooper she is she puts up with the discomfort like a champ.

Dar's sister Diane and husband Roger will be at Kentfield Wednesday with us and I hope that they will be able to enjoy Dar's "nightengale" voice and see her eat solid food. Prayers please for Dar's visit to Dr. Shapiro Tuesday and we might find the reason Dar is having trouble with the "button".

Must take a moment to express our joy for the John Murphy family. You remember John is the Cal Poly student that fell from a 4 story window some 9 months ago. John, a resident of Kentfield for 8 months and patient of Dr D is graduating to a new facility near Kentfield, still Dr D's patient and another huge step closer to going home.

A miracle, John has triumphed above all odds. John's family has looked forward to this day for months, wondering if John would ever progress to where he is today enduring the weeks of no improvement, the steps forward, then the steps backward, the Murphy family has endured and God has blessed. A testament to prayer and faith, John Murphy is walking, writing, escaping from his bed and beginning to talk as he leaves Kentfield Hospital Tuesday at 1:30

The stars always in sight, John is one step closer to going home.

To the Murphy family I would like to say, I will miss you all, miss John's antics, miss the text messages you send Peggy, the camera pics you send. Kevin, our talks in the lobby, the smiles of Molly and Kaitlin, (sisters). Things will be different now but these are the goals that we all strive to reach when we have a loved one in this situation. Moving forward and upward, that's what we are about. Thank you Murphy's, thank you for all that you are and thank you for being a big part of Dar's and my life. This is not good bye. We can't say good bye to family, family is with us forever, and your family is our family.

GO JOHN MURPHY!!!!!!

In closing I have chosen to save a comment from Dr.D regarding Dar's progress.

"Dar is doing very,very well"

Please continue to pray for Dar and know that we love and appreciate all of you.

Pray for John Murphy and his continuing progress.

Pray for Rye Spitzer, (our other extended family) accross the hall.

Long post today folks, thanks for reading. Love you all

Dar/Danny/Mav

" Another good day for Dar"

04-23-2009
0544 Hours

Although yesterday was a good day for Dar, it was not without a couple of disappointments.

Dr. D removed Dar's trach and put the button in in the morning. Dar accepted the button for a couple of minutes and then began to struggle some. Dr D removed the button and Dar was fine. Dr. D put her regular trach back in and Dar was again comfortable.

Dr. D believes that Dar may have an obstrution above the trach and has made an appointment for Dar to return to the ENT specialist on Tuesday. Although a minor set back Dr. D is not overly concerned.

In regards to Dar's meds Dr. D is going to reduce her dosage of the new one. Dar will be back to her happy jovial self be Satuday morning.

Still excited and pleased, Dr D continues to stay on top of Dar's Recovery.

I continue to be amazed with the dedication and commitment of everyone at Kentfield Hospital. A very special group of care providers.

Again we thank you all for your prayers and thoughts. I ask that you continue to pray for Dar and her recovery.

Love to you all,

Danny

" Latest News In Dar's Recovery"

04-19-2009
1556 Hours


Here is the latest communication between myself and DR. D


--Dr. D

If there was an attachment you wanted me to open, I was unable to do so.
If not disregard this message. With Dar, happy, comfortable and "tone" both
legs, hands, arms seems much better. Talking like a J bird, very tired today,
busy week I am sure
Look forward to hear your plan for "button

Danny Mardilla
cntrydjpro@sbcglobal.net

-Subject: update

my plan is to place the button this coming week. either wed or thursday.
dar is doing great and really communicating!
i am changing her tone meds around a bit. we will reassess next week, which will give the medication time to work and build up to a reasonable level. the spasticity was not ideally controlled with our combination of dantrium and baclofen, especially at the hips and knees. therefore, i have changed out one of her drugs for tone for a different one. we will need to see how well the new one works and whether or not it makes her sleepy. we are following her hip and knee tightness very carefully. debbie b. is checking to see if the insurance will pay for some fancier splints called dynasplints for the legs.
sorry i missed you. thursdays i work very late since dr. waters is off on thursdays. i know that you are burning the candle at both ends, between work and having darlene in the hospital.
hope you are taking care of yourself too!


dr. d


-Subject: RE: update


If today was an indication of reaction regarding Dar's new meds, she was very definatley sleepy all day. Never opened her eyes all day. Was a great sport all day but seemed very very tired. Was up in her chair from 10 til 2:30. Outside, took walks, was very happy, pain free, communicative, aware of her surroundings a total trooper but just seemed very tired. virtually no pain when it came to splinting hands, allowed me to work range of motion with legs, only whimpered about range of motion to arms and shoulders. Very understanding about what therapists are doing and thanks them when they are done. Understands that no one is trying to hurt her and will tell them she knows that it must be done.
I just can't believe the progress she has made in the last 10-14 days. I was trained in feeding her puree foods, she enjoyed ice cream and V8 juice this afternoon. She continues to astound me with her progress. I am so proud of her and thankfull to you and Dr. Waters.
I will be onsite Wednesday if that sways your decision to place the "button". In the event you would like me to stay with her overnight (bipap) let me know and I can make arrangements. My workplace is aware of Dar's progress and knows the next step we are about to take. You make the call.


Thank you again Dr. D


Danny
Ps, I have noticed that since you changed the order about the Vicodin to every 4 hours and the morphine at 2:20, and if needed other times Dar seems much less to be in pain. It seems to me that since Wednesday, and especially today her tone has decreased significantly and she seems much more comfortable. As I said she is without pain all day, only the morphine at 2:20, and the vicodin, she wants to be outside in her chair and does not want to return to bed. Even after a tough therapy session. I weighed her today and she is at 105, just about her fighting weight. She sleeps well and just look downright happy. Quite the fighter.


Thanks Dr. D