Morning Doctors,

Now I'm really stumped, We just got the results of Dar's blood work up. Everything is normal, WBC is 5.8, no anemia, thyroid is good everything looks fine. I am glad we have nothing brewing, but why is Dar so lethargic.

We have discoverd in recent months that Dar does retain CO2, three times at the hospital they have over oxygenated her to where she has had to have her trach replaced and put on positive pressure in the ICU, each time her ABG showed very high levels of CO2 retention and she would do a whole lot of sleeping. Just like she is now, is it possible that she might be "naturally" retaining CO2 on her own.

We do have Dar on 2 litrers of O2 @ 24% at night when she sleeps so we can keep her O2 sats around 89-93, this is typically where she is during the day when she is awake, I discoverd at night when her sleep apnia kicks in she would constantly set of her O2 monitor. With the little extra help from her ""low flow" concentrator she does not set off her monitor and she and I both sleep.

From about 8:00 am till 10:00pm she is without assistance from the concentrator, and she does periodically set off her monitor, and will drop O2 sats to 85 occasionally when she takes a deep breath or is sound asleep and we have to remind her to breathe. We also always check her cannula for obstruction when this happens.

Could she be naturally be retaining on her own and not getting rid of her CO2, do we take her to have an ABG done and see where it is.

Her resperations seem to be normal for her, her O2 sats seem to be normal for her in the 90 to 94 range.

She is not in apparent distress or discomfort.

Can this all be related back to emotions, awareness of her circumstances? Can she be way depressed, she just does not have the spark she has always had.

Do we need to look into somthing different for "mood".

I miss my girl that was always so happy and perky, always willing to respond with happy facial expressions, she is soooo very quiet and sleeps so much at the present time. I remember you said sleep was a very good thing, is it still??????

Am I overreacting, should I just relax and ride out this period of apparent "mood change".

Danny

A short update as to the days events.

Jamie, Scott and Dar made it to all appointments without complications.

Dr Darwin gave Dar a clean bill of health as far as her lungs are concerned. They are clear and sounding good. Dr Darwin did order a complete blood work up that will be done by home health tomorrow. Dr Darwin also is wondering if Dar my be reacting to the new Amantadine and was wondering if we could stop for a few days. In my research before beginning the med I learned that you just don't stop, you have to back off slowly.

I emailed Dr Doherty and she said that it would be worth a try to back off over 5 days and then evaluate again. If we see no change then we will stop and regroup. I will begin giving Dar 2.5mls instead of 5mls tomorrow morning. Time will tell.

Dr's visit to Dr Lang was good also, he gave us a 90 day script for a UTI med that is very effective. He did say that as long as Dar has the foley we are always going to show signs of bacteria. Home test will always show positive. he told us we know her best and if we suspect a UTI than go ahead and use the new med, again time will tell.

On a brighter note, Mike Hopkins from Dynasplints will be coming to the house soon to fit Dar for her new arm splints. This is the same company that supplied the splints for Dar's legs so many months ago in the bay area. The use of these splints on Dar's legs was a total success and we now enjoy full range of motion. I can only be optimistic that we will see the same results for her arms and wrists. These splints are state of the art, even used in the world of Veternary Medicine.

I have been really pusing hard to get these splints for Dar, we did run into a major roadblock recently because Dynasplints was not going to provide them because of an outstanding balance from her leg splints. It seems that Blue Cross paid the first two months but then decided that the use was not medically neccessary, infact they said it was more investigative, what a load of crap, well Dynasplints is appealing the decision and I too have filed a grivence with Blue Cross. Unfortunatley, the balance needs to be paid. I told the very nice account clerk from Dynasplints that as soon as they got someone to the house to fit Dar for the splints I would personally write a check for the balance owed. Such a load of garbage to hold treatment for a patient while the higher ups do battle over a balance. Anyway, Dar is the important one, I will pay it and keep up my fight with insurance.

Well, that is what is going on at this moment, stay tuned and please keep those prayers coming, love you all.

Dar/Danny/Jamiesue

If someone asked me today what my definition of reality was I would reply, "what is is, and is probably going to be and there is probably not a whole lot I can do about it" but,,,that does not mean I do not have faith and hope, "I do", "lots of it", I am just living in my "real world", mostly black and white, wish I could find more gray sometimes.

No real change in Dar's condition today, this morning I was quite excited that Dar greeted me with many smiles and joyous appearance.I left for work with hope and anticipation of great reports from Jamie throughout the day.

To say the least I was "bummed out" most of the day. I am always glad and happy to get home to Dar at the end of my day at school, but I must be truthfull in saying that I am just a bit worried that I am missing something. Is something going on elsewhere in her tiny body that is causing her to feel so lousy. Am I asking the right questions, looking in the right places, adding up all the "sums" of what I might think is going on and coming up with the correct possibility. I don't know.

I have emailed Dr Doherty and Dr. Waters again hoping they might point me in a direction that will lead to a "soon" recovery for Dar. There are so many possibilities with Dar, her trach, her pump, the new placement of the porta cath, are they all interrelated some how? Are her "meds" doing what they should, is this possibly all related back to her recent UTI, is it gone, did she and is she still having some sort of a reaction to the UTI med?

These questions and so many more engulf my brain constantly during the day, and to be honest I am just a bit concerned as I said before.

Tomorrow Dar and the girls are headed to Paradise to see both doctors Darwin and Lang. I pray that they will be able to shed new light on Dar’s condition. I am anxiously waiting to hear from Dr. Doherty and what her thoughts might be.

If we receive no real answers tomorrow do I continue to weather the storm or do we make another trip to the Enloe ER and have tests done to clear any suspicion of other possibilities? Does Dar have some other “bug” that is causing all of this?

Yes, this is my reality, very black and white in the sense of what I can see and touch, but very gray with respect to what might be, what I can’t see and touch, what is out of my control. Faith, hope, you bet I have it, why, because I believe in God above and I believe in Dar, probably the most courageous person I know. To be in the “place” she is and still have the ability to laugh, cry and find sooo many reasons to be happy, yes she is my hero on earth, my best friend.

Please pray that God’s hand will be very active tomorrow as the girls head off to see the doctors. Please pray that answers will be found. Please pray that as others and I helping Dar with this “journey” will be replenished in spirit and physical strength as we continue this “marathon” back to life.

God bless you all,
Love to all.
Dar/Danny/Jamiesue

Still battaling this stinkning UTI. Fevers have decreased, at times Dar will show signs of her "perky" self.

Doctor appointments in Paradise x's 2 this week, maybe we will get some new direction and a new plan. As always, we greatly appreciate all of you and your support.


It's 3:45, Dar has on occasion laughed a bit today.She has been awake all day today and only taken lil cat naps. I take these all to be good signs, we have enjoyed a bit of reading and she has laughed again at some of my silly impersonations.


It has been an enjoyable day and I look forward to the girls getting out on Tuesday for Dar's appointments.
We hope all of our extended family is having a great weekend.


Love to all and please continue to pray for the Lil Angel.


Love to all,
Dar/Danny/Jamiesue

Its 9:30 Friday night. As I watch Darlene sleep and rest I reflect on how tired I am. How drained I have felt since last Saturday. I quickly am reminded that as tired and drained I feel Darlene must feel exponentially more fatigue and despair than I could imagine.


It will be a week tomorrow that Dar started feeling poorly. On Sunday, being convinced that she most likely had another UTI I started the Leviquin, tried to contact Dr Darwin and did my best to keep Dar’s spirits up as much as I could.


Monday I was able to reach Dr Darwin and we switched Dar’s meds to Furdantin. Home Health came and took a urine sample; we finally got the results late yesterday afternoon. Yes indeed Dar was positive for bacteria. We are giving her the correct meds and we now wait for Dar to get better and beat this infection.
In the past Dar has taken this med in tablet form, now she is getting the same dose in a liquid. I am of the feeling the liquid is having some ill affects on Dar. She is very sleepy, very lethargic and in no way herself. When she took the med in tablet form she took it twice a day, 12 hours apart. Now she takes it 4 times a day with her food, and I believe that it may be causing her some discomfort. Dar runs a slight fever at times during the day, and is by know means her usual self.


I spoke with Dr Darwin this afternoon and we are going to cut back to 3 doses a day for the remainder of the med. We have started giving her food first and then her med an hour or so later, it seems to help.
Occasionally Dar show signs of her “spirited” self and I long to have her back as soon as possible. Please pray that this bug will leave her body soon.


Tuesday Jamie and Margie will take Dar to see Dr Lang and I hope and pray he will be able to shed some new light and maybe a new plan to prevent the frequency of this nasty bug.


As I said, this must be so hard for Dar. She is such a fighter, such a gentle spirit, and such an angel.
Please pray that the next few we will see positive steps toward recovery.


Good night my friends, I am off to bed for a few hours of rest.


Love to all,
Dar/Danny/Jamiesue

May 10, 2010
1841 Hours

Just a quick note to fill you in that Dar is probably battling another UTI. Saturday she was way laid back and not participating in any activities. My attempts to reach Dr Darwin proved to be useless; I finally was connected to an on call doctor at Feather River Hospital. This particular doctor tried as best she could to help and agreed that my decision to start leviquin might be well advised until I reached Dr Darwin.

Today I reached Dr Darwin and she was a bit upset that the protocols we placed to contact her were not followed, she assured me that the problem will be corrected.

In addition, our local pharmacy dropped the ball delivering Dr’s meds on Friday and again on Saturday. After a brief conversation with one of the owners, I was assured that all meds will be delivered promptly and that corrections will be made on Dar’s computer profile. Since I figured I was on a “roll” I also mentioned to the owner that his “counter” telephone help might try a bit harder to be a little more ‘upbeat”/”pleasant” with their customers. The owner received my “polite concerns” with humility and said he would make efforts to change this atmosphere.

Dr Darwin did have us stop the leviquin immediately today and start Furdantin, 4 times per day for 7 days.

Enloe health was out today and took a urine sample and we hope to have the results of the cultures Thursday at the latest. We have given Dar 2 doses thus far today and she seems a bit better this evening. Still running a fever, I look forward to having Dar begin to return to her normal behaviors soon. We are still on tap to see Dr Lang on the 18th of the month, I hope he will have some definitive plans on how we can slow down the frequency of these persistent UTI’s.

On a lighter note, my plans for a “get away” are getting closer to a reality. My fishing buddy and school bus mechanic Joe, have decided to take our trailers and “fish cats” to Butt Lake in Plumas County on the 5th of June. We plan on “hitting” the “hex fly” hatch with great anticipation and excitement. Now we just have to hope it starts while we are at the lake. Butt and Almanor lakes are noted for the excitement of this 45-60 minute frenzy, sometimes on a nightly basis. It only lasts for a short time per night but it can be the most exciting few minutes a fly fisherman will ever have.

In addition, this choice of lake allows us to fish Almanor and also surrounding creeks and streams. I can now begin preparing Dar for my absence in early June, I believe that with everyday conversation Dar will actually encourage me to go and relax, thus helping me to not ‘feel guilty”.

I did get away Saturday afternoon again with Elby. I met him at Oroville Lake about 2:00 in the afternoon, he already had been fishing with our boat since early thirty and we had a good afternoon and evening of bass fishing. In fact, I lost probably the biggest bass I have ever hooked, dancing on his tail 3 different times Elby was a bit late with the camcorder and then the nightmare of every fisherman……….. Watching a huge fish dance on it’s tail and grin at you as he throws the hook, my heart stopped, I yelled, Noooooo, **** it, OMG he was huge!!!!!!!!!!!! That’s why they call it fishin, not cat catchin, oh well, another day.

Well, I will keep you all updated, stay tuned everyone, more to come.

A big shout out to Gracie Ferris, keep up the good work sweetie, I read about you everyday your mom posts, you are doing fantastic, Nikki, thanks for reading and following Dar’s Recovery, A Journey Back to Life.

Well good night dear friends, please continue to pray for Dar. We so appreciate everyone, till next time, God Bless.

Love,
Dar/Danny/Jamiesue

Ps, pray for our weekend help Margie, she is having some test for what she suspects may be a hernia. Our prayers for her and a speedy diagnosis, and nothing serious.

Dar is laughing about something as I close, I can only imagine what that means, she is OUT OF CONTROL WITH LAUGHTER, I LOVE IT, :) :) :) :)

Good night

Dar's pump has been turned up to 350 mics per 24 hours, need for additional oral med support should go away. Dar was in fabulous form with Dr Arragonte. The girls, Dar, Jamie and Margie then went shopping for supplies. Made 3 or 4 stops before heading home, Dar was GREAT, they even thought about goin "yard sale'n",... ...another day. So good to have this "scampy angel" back. Yah Whoooo.

Thought I would take a moment to let you no that today is day 5 of Dar's new med Amantadine.

We started last Saturday morning, by Sunday afternoon we stated seeing some positive changes in Dar's personality and attitude.

Sunday we say more increase in her wakefullness and participation, by 4:00 pm Dar appeared to be getting even closer to her ol self. Her mom and dad called at 7:00 pm and Dar was very glad to hear from them and was more vocal than she had been in many days.

On Monday she began showing us even more of the "old" Darlene that we all have come too love and adore. Trying to say and speak those words that she has spoken before, answering all questions, working ever so hard in all her therapies that we do for her.

Yesterday, day 4 was the most impressive, from the time I got home from work Darlene was her perky, laughing happy self that we have so missed since her return home April 8. Full of life, full of joy and laughter, it was so good to have her happy.

I do not dismiss that just getting rid of whatever "bug" she might have been fighting has a great deal to do with her new energy, I am sure it plays a big role, I continue to watch and hope that this new med will be of great benifit to her and so look forward to the days ahead.

This morning, after a good night sleep Darlene greeted me with smiles on her face and laughter in her heart.

Thank you so much both of you for what you do for us.

Will continue to keep you posted, take care.

Love ,

Dar/Danny

Not posted at the time of mailing this email to the doctors.

Dr Doherty also asked us to investigate as to the frequency of Dar's UTI's. If something was discoverded that might indicate a reoccuring "bug" that we should make an appointment with a Urologist.

Evidently Dr Darwin has possibly found something that she believes might need to be checked out by Dr Lang,a Board Certified Urologist in Paradise. I have no idea at this time what Dr Darwin may have found but we have an appointment to see Dr Lang on the 18th at 1:15 in the afternoon.

Maybe we will get some answers why Dar has these persistant infections.

Your prayers will be greatly appreciated.

D/D

May 4th 2010
0650 Hours

Day 4 of Dar's new meds and we are starting to get our "lil princess" back. On Sunday afternoon Dar started smiling again and by 7:00 pm she was laughing with her mom and dad on the phone. She is trying to say and speak some of the words she could say before. This is all great news and I am so thankful to be seeing the return of our "lil angel".

Last night Dar ran another low temp, this morning she was back to normal. I wished we knew what if anything is still going on.

Today Jamiesue and Dar are having a day at the spa, nice bath, pedicure and manicure, even new sparkles on the toes, Dar really enjoys this very special attention.

Friday Dar returns to Enloe Rehab for "pump" titration and it is my hope that this will also help with her comfort level and allow her to relax more.

I spoke with Sacramento yesterday regarding Dar's "place" in line on the waiting list for the State NF/AH wavier that she qualified for a few months back. I spoke with one of the case managers but unfortunatley they have no way of knowing where Dar is placed on the waiting list. I guess we will have to just wait patiently for that piece of information to come in the mail. I do know that it could be a long wait.

Well, I hope you have a beautiful day today and we will keep you posted as we continue this "Journey Back To Life".

Thank you again for all of your prayers and support.

Love to all,

Dar/Danny/Jamiesue

May 2nd 2010
1550 Hours

As you know we started Darlene’s new medication yesterday, maybe I’m being a bit optimistic but in the last few minutes it seems like she is trying to say some words and making some vocal sounds that have long been missed.

Dr. D told me that we could start seeing some results in a couple of days once the medication was started. The medication, Amantadine is not an anti depressant; it is an “activating agent”. As I am told the most rare side effect is over stimuli.

I truly hope this will be helpful for Dar.

Peggy I have to say thank you for your words the other day. I really needed to hear and read them. I am glad that in John’s case it was effective.

I am so glad to read how well he is doing. We miss you all so much. I have so many vivid memories that are forever engraved in my mind and heart. Times of joy, sorrow, anger, humor, excitement and probably the most important of all love. The love of new friends made by accident but has grown to be life long friendships.

From our time together at Kentfield and then CareMeridian. Life long friendships with you the Murphy’s, the Spitzers and the Stewarts. I will always carry these memories with me for the rest of my life. Distance cannot take away these video pictures in my head. Please tell John how proud of him we are.

Darlene had a very short visit with Dr Darwin on Friday, everything looks pretty good and she wrote a couple of 90 day scripts, one for the Amantadine and one for a new breathing treatment medication that we will add to the one we use now. The new med is sorta like a steroid for her breathing.

Yesterday and today Dar got a special treat, she had some tapioca pudding yesterday and chocolate pudding today. She really enjoyed this “recreational” food. We will try to give her this special treat on a daily basis. The advantages to this are two fold; it gives Dar something to look forward to and also helps and assists her in her swallowing efforts.

Both are very important.

During my emails with Dr. D last week the subject of how I was holding up came up. Having to be honest I told Dr D that here of late I have been having my own difficulties holding it all together.

School coming close to an end for the year, the students being wound up tighter that an 8 day clock, all add to an already stressful day.

It was Dr. D’s very strong opinion that I need to get away for at least a week if not two, as far away as I can. Well, two weeks is impossible and doing anything before school gets out is also impossible.

I have decided that I am going to plan a week beginning June 5th to take the trailer and the boat to one of our nearby lakes. If it all works out I can use my lake choice as a base to do several types of fishing. It’s not about catching fish this time; it’s all about resting and filling or refilling myself.

I told Dr D that I am a strong, I want to do this, I can do this, I want Dar to be at home, I just have to face the hard reality that it is starting to take a toll on me. I know I have to keep it together in order to be the best for Dar.

If all goes well and I get all my ducks in a row, Jamiesue will move into the house and watch Dar during the day, Margie will do her Friday, weekend thing and Scotty, Jamie’s fiancé will help Jamie in the evenings and overnights.

Now the goal is to keep it all together through the month of May and the first week of June without loosing my marbles.

Certainly seeing Dar get more of her sparkling personality back will be a huge help. It tears at my heart to see her not feel well and not be able to tell us what it is that is making her feel that way.

Tomorrow I will be contacting Dr Spitzer’s office; Ryne’s dad has consented to reviewing all of Dar’s records, evaluations and videos related to her vocal cord and trach issues. If you recall, Dr Spitzer is an Ear Nose and Throat doctor. I am hoping he might be able to shed new light and possibly new ideas regarding Dar’s vocal cords. Maybe a new plan too.

We hope you have had a great weekend and we will keep you posted over the next days.

Love to all,
Dar/Danny/Jamiesue