" Question Answered "

December 17, 2010

It was asked of me the other day if I thought Dar would come home anytime soon,

If asked and I had to answer today, the answer is this, due to her new complex issues, Dar is in the best place she can be. The staff is great and it allows me/Jamie to be just a little more of a husband andfamily instead of constant advocate.

Future and what it holds, I have no idea, its all in God's hands, I am thankful for where she is. I would not want Jamie to have to deal with something that could leave years of anguish on her heart.
As much as I have to be thankful for, this time of the year is very very difficult, isolated from so many, feelings of outcast, 3rd christmas without Dar at home, just a difficult time of year for me.
Your question was not touchy, I have had to accept and make some hard decisions quite some time ago. Dar is where she is supposed to be and getting great care, I still hope and pray for great progress but I live in a black and white world forced to accept the gray.

This morning I learned that it appears that Dar is really enjoying the TV that was brought in last weekend.

Remember in my post the other day that I thought I was missing the obvious? Well I think I may have been right. I had forgotten how much Dar enjoyed the shows that we watched at home. Although she is not able to see the show there is nothing wrong with her hearing.

In the email I received,Susanne expressed that it is almost like Dar is getting ready to burst out giggling and smile. As you know Susanne is the R/T tht has been so awesome with weaning Dar from the vent. She is hoping that when Dar does start giggling and smiling she is with her. I hope so to, Susanne has been great.

As I stated, I feel like a dummy that I missed something all together. We have a small 13 inch tv with VHS capabilities and and some tapes that I am sure Dar would enjoy. I have additionally put out the call for folks that might be able to lend us some tapes that would be uplifting and help keep Dar’s spirits up.

You know the type, chick flicks, comedies, Free Willy, Snowy River, Homeward Bound, J-Lo movies, Wedding Planner, Pretty Woman, you know gurly stuff. Ha ha!!!!!!!!!

Anything that will encourage and challenge her to interact, even if its just smiles and laughter. As I said, I missed the obvious.Opppps.

Hope all is well with you and yours, love to all of you,,,,,

Dar/Danny/Jamiesue

December 16, 2010

Evening all,


9.5 hours today, !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Go Dar !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

" More good news "

December 15, 2010

Good morning to all, as the Holidays draw nearer I find myself feeling all sorts of emotions. Nearing the two-year mark of Dar’s accident, finding the blockage in the left lung on Christmas Day, Dar awakening from her coma on my birthday, Jan 4th.

The last two years have been at the least a time of growth and reflection on my part. Two years ago you could never have made me believe that Dar and I would be traveling a road that one might think is reserved “for the other guy”, I could not have been more wrong.

These last couple of weeks I find myself thinking of the day that Dar and I spent together just before she went off to work, first to the Post Office and then to Walmart. I had cooked dinner early that day and sent her off with a smile and good wishes for a great day. We spoke on the phone during her lunch hour, she was busily doing a Christmas craft project while she ate, a needlepoint project for one of her co-workers if I recall correctly. In fact that very project is still in her Home Depot nylon bag in her room. Little did I know my life would change forever in but just a couple of hours after speaking to Dar.

I had no idea that Dar had been feeling pretty lousy for some time, you see Dar was not a complainer, she wasn’t the type of lady that stayed home from work because she felt a bit under the weather. Even in the years before she and I were married I don’t think she ever called in sick to the school, let alone if she were feeling poorly would you ever be able to tell. That’s just how Dar is, that’s how she rolls. I don’t think I will ever forget that dreadful phone call at 11:45 and the ensuing hours and days till the Christmas afternoon when they found and removed the blockage in her lung which eventually led to her coming off the ventilator.

We have had so many blessings in the last two years, even since last Christmas.

Dar came home in October 2009, she was able to get out and do some traveling to doctors, Jamie and Margie stepped up to care for Dar so I could keep working and occasionally get in a fishing trip. Dar progressed at home in ways that can only be attributed to the “home”. The list is bountiful.

With so many things to be thankful for, so many answers to prayer, so many reasons to be grateful; why am I in this “funk”?

I don’t know if you can begin to imagine the thoughts and thinking one might go through as one travels this road. Most of the time my thinking is level headed, meticulously clear, always with Dar’s best interests in mind, always looking for what might help her regain as much as she possibly can. For some reason, this Holiday Season I am really struggling, second-guessing myself, allowing myself to have thoughts that I have missed something, that I have not done something I should have or I missed the obvious.

Enough about me and my “funk”, I will find my “peace”, I will get back on top of the mountain, I have too.

Yesterday we had more good news, Dar went 8 hours in the “spontaneous mode” on the ventilator, once again “spontaneous” means that she is doing everything on her own and the machine is only there to back her up if for some reason she “forgets” to breath, the machine is set for 10-12 seconds. Thankfully yesterday and during the 8 hours Dar did not have any “apnic” episodes.

Additionally, Dar’s Dilantin levels were totally in the “therapeutic” range, therapeutic range is between 10 and 20. Dar’s level was 16.6. This tells us that in theory Dar should not be having any seizure activity. We are going to have an EEG on the 30th to confirm this. Keep in mind the EEG will only show if she is having any seizures at the time of the test. It will not tell us if she has had any since the last test was done.

These results that I have been so anxious to have are leading up what will be more communication with Dr Doherty regarding Dar’s demeanor and lack of luster. You see, II am of the belief that Dar is suffering from the same thing I am. I believe that she too is in a “serious funk” and has taken the one thing that she can control and is “choosing” to exercise that control. If you recall she has done this before, both at Kentfield and CareMeridian. Both times she became “inward and non-responsive”, both times we were able to find the problem and address it and “all was good in the hood”.

Once we know that the seizures are under control I will seek the advise of Dr Doherty, who is waiting right along with us, and follow her ideas.

The staff continues to amaze me, we even received a personal Christmas card with many of Dar’s caregivers signatures, such a nice thought.

I do have a prayer request specific to Dar’s roomy at Kentfield, do you all remember Latosha Stewart? Tosha was Dar’s roomy and she and her mom and dad took Darlene as one of their own, They all watched out and over Dar when I was not there and if Dar was ever in any trouble Latosha was on that cell phone of hers texting her dad and it would not be too long after that Dar’s needs were met because Stewart made a phone call from home.

Well, Latosha is back at Kentfield, I will reserve details until such time as I have spoken to Carol and Stewart and have their permission to share with you. Let’s just ask that you specifically pray for healing in Latosha’s body, rest for mom and dad and among all peace for the whole family.

It is my plan to drive to Kentfield Saturday morning and spend a few hours with the family and then go see Dar on the way home, after all it is on the way, (ha ha), that’s supposed to be funny, : O )

Well as I said, I will do my best to overcome “my” funk, please pray that Dar will find her perk soon. Oh, maybe a cancellation in the EEG schedule might speed things up too.


Love and thanks to all of our friends and family,

Dar/Danny

" Recap of events "

12-05-2010
1930 Hours

Seasons Greetings to all of our faithful readers, it has been a bit over a month since you have last heard from us.



As you remember we moved closer to home. Although the actual drive time is less I have found it a bit draining. Being closer to Dar and trying to see her on a daily basis has been taxing on both my physical body and my mental fitness.



I am so thankful that Jamiesue has been able to help out a few days a week to go see Dar. I have to find a way to accept that it is ok and not to feel guilty when I don’t drive that hour and half from work to go see her. To date I have not found that acceptance within myself. Everyone tells me that I must take care of myself also and they are correct, I do try, I do take some moments for me, yesterday I rode the Harley along with 450 other riders on a Toy Run in Chico. It was a great day and the weather was great and the kids that this benefit was for will have a fantastic Christmas. I was proud to participate.



The difficulty in my day is that I never completely let go of Dar’s and my situation. I am constantly trying to learn, constantly thinking, constantly looking and researching answers to why some of the visible things that we see on a daily basis are occurring or not accruing. It’s a 24-hour a day quest



Since Dar’s move closer to home there have been no real issues to speak of. We still are having some difficulty dialing in on the correct dosage of Dilantin, sometimes the blood work shows that it is correct and the next test shows that it is too high. We adjust and recheck a few days later and its too low. We have adjusted again and will recheck on the 13th of the month. The plan is to give a longer period between check to hopefully get a more accurate result.



Dar did travel to Rehab Medicine to see Dr A and had her pump titrated and refilled in addition to Botox injections for the teeth grinding issue. Her trip was a couple of weeks ago and we have started to see a significant relaxing of the teeth grinding.



I cannot say enough about the staff and Dar’s new residence. The whole staff has been great, I call daily if I am not going to be able to be there, they graciously put up with all of my questions and suggestions.

Suzanne, our Repertory Therapist, has been working ever so diligently and cautiously weaning Dar off the vent. Dar has been able to sustain herself for about 2 and a hald hours in the spontaneous mode with no apnic episodes. A couple of days this week Dar was not having anything to do with weaning, we believe she was not feeling well and thus just did not want to come out and play.



I have shared with you before that I feel that the events of the 23rd of June, the seizures and the brain bleed really took a toll on Dar. Again, I ask you to pray for God’s blessings for Dar. It is so very difficult for Jamie and I to know and have so many great times with Dar here at home and to now see the affects of the June seizures. We have every faith and hope that in time and with the adjustments in the meds Dar will regain her progress. Do D also said that we should see improvement monthly but it could take up to a year to regain what may have temporarily lost. Normally seizures do not cause permanent damage unless they are very extreme and over a long period of time. Please support Darlene in your prayers that she continues to heal and God continues to work in her life.





We are scheduled for an EEG on the 23rd of the month, (we are hoping for a cancellation) to evaluate if Dar is continuing to have the sub-clinical seizures. This in itself can have a dramatic affect on her demeanor and responsiveness.





As I close I want to wish you all the Happiest of Holidays, and if you will indulge me for a moment I would like to ask all of our readers to for but just a moment take the time to reflect on the blessings you have in your life.

Be ever so thankful for the loved ones you have in your life, the family and friends that make up your world. Tell them that you love them. Don’t wait and put off till tomorrow what you might be able to take care of today.





Don’t give up on your dreams, don’t quit just because it gets a little hard or difficult, dig in, call for the strength form God to see you through the tough times.





Sometimes I think God puts in front of us what it is that we desire, kinda like a hot apple pie, but we have to reach out and take a piece, have faith, trust and hope.





December 1st was National Pay It Forward Day, well the 1st is gone but don’t let the date stop you from doing and participating in some Random Act Of Kindness, I truly believe in the concept of pay it forward. A simple I love you or thank you, a compliment, a hug, or even just a smile.


This Christmas will be the 3rd Christmas that Dar has been separated from her loved ones, her mom and dad, her sisters, myself, Jamiesue and my family and even you her fellow co workers and faithful readers.

I would not wish this saga on anyone and I want all of you to know how much you mean to me and all of our family. Thank you for your prayers and your support. Thank you for the love that you have shown to Dar, thank you from the bottom of my heart for all that you have done for us.

God’s blessing to all,

Love,

Dar/Danny/Jamiesue
Lorrie and Jerry and family, Julie Mardilla,
Alvin and Sandy, Roger and Diane, Gary and Christine and family

" Snippets from Facebook "

10-13-2010
0500 Hours

Snippets from Facebook beginning September 23, 2010

Dar is doing much better these last two days, speech therapy class was A+, CareMeridian facility in a couple more weeks maybe sooner, Jamie and Scotty will see her Sunday, I'm off on LIL DAR, (the harley) to Street Vibes in the morning, yah hooo,
September 23 at 4:54pm

Darlene was put back on the ventilator Sat afternoonan seems that she is having Central Apnea issues, CT scan ordered for this week in addition to EEG to see if she is still having siezure issues. Facility I inspected in Willows on Friday was "rockin". Staff was warm and informative and believe they can help Dar, I was way impressed,having Dar closer to home will be so nice. Thanks for your continued support.
See More
October 4 at 7:45pm

Dar's CT Scan was normal, nothing new since the brain bleed in June, Thank god and all of you for your prayers, EEG to come in the next few days to see if she is still having siezures, off the vent (still connected if she forgets to breath) yesterday and today during the day, rests at night with it which is when she u...sually has her apnic spells. Moving the right direction, yea we are, !!!!!!!
See More
October 5 at 9:13pm

here is an update as of this afternoon, 103 fever this morning, 130-140 heart rate, UTI and that **** Pneunomia again, doc Doherty and staff were all over it though, last text from doc D says "so far so good, Dar is resting comfortably, all systems go, mild pneunomia, antibiotics should nip it in the bud" end quote.
October 7 at 4:43pm

today is bitter sweet, Jamiesue will be married today to Scotty at noon and Jamie's step mom, Momma as Jamie has always called her, will not be in attendance, Dar and I spoke of todays happiness for Jamie and Scotty at great length yesterday and I know she was able to understand. Jamie I know Momma is as proud of you a...s I, and I know she wants you to have the most glourious day, Momma and I are so proud of you both,
See More
Sunday at 9:31am

email quote from Doc D today regarding Dar. "Darlene looked great today. White blood cell count really good. Will start work on vent weaning tomorrow, all is well on Dar's end", end quote, a real fighter my wife, go Dar, !!!!!!!!!!
Monday at 5:53pm

Darlene has no fever today. Her O2 saturations are around 95% on room air, no O2. They are going to try her on a trach collar if she tolerates a trial of CPAP first, if all goes well Doc Waters will let her rest back on the vent tonight. This allows her to work at strengthening her lungs during the day and get good res...t at night, keep up the good work my lil angel, we all love you and are praying for your recovery.
See More
12 hours ago

Please continue to pray for Dar and the doctors that take care of her. We love appreciate you all so very much.

Dar/Danny

"EEG Findings"

September 17th, 2010
1100 Hours

This was a recent question I had for the doctors after I had done some research about Sub Clinical seizures and their relationship to Epilepsy.

Keep in mind; although Dar may now suffer from these seizures, they are totally treatable with the medications she is already taking. I would assume it is now a matter for the doctors to find the correct dosage and we will probably have to have periodic testing of both the meds and an occasional EEG to look for “Abnormal Activity” in the brain.

Morning doctors,

Regarding Dar's sub clinical seizures and their association with Epilepsy.

If an individual has sub clinical seizures does that mean they "have" Epilepsy? Does Dar?

Thanks, Danny

Dr. Water’s response

1.Yes
2.Yes

Susan

This is Doctor Doherty’s response,

Yes. Sub clinical just means we can't see the seizures just from looking at her. However, the EEG tells us what is going on electrically in the brain. Seizures are abnormal electric discharges.

Hope this helps.

Dr D

To our readers; don’t get hung up on the word Epilepsy, just think of like this, “ we now have confirmation that without proper medication, Dar suffers from abnormal electrical discharges in the brain. Normally the seizures do not cause permanent damage, I expect Dar back to her “perky” self very soon. This is all totally treatable, I can only assume that the clinical stigma of Epilepsy is more for clinical “coding” for doctors and providers. I will be looking into the possibility of other programs that may be available to Dar because of this new clinical finding. If you know of any, please let me know.

Love to all,

Dar/Danny/Jamiesue/Mav

" Something Quick"

09-14-2010

0340 Hours

Just a quick little update to last nights post.

Doctor Waters emailed me with information that "according" to
prelimanary reports, Dar is still having the Sub Clinical Siezures.
Doc Doherty has increased Dar's siezure medication and another EEG
will be done in a week or so.

This might have a direct relationship to the "lack of perk" that
we are all seeing.

Have a great day everyone,

Dar/Danny/Jamiesue/Mav

A Letter To Our Readers

August 13, 2010 1600 Hours

Dear Readers,

No, and I repeat NO!!!!!! , nothing drastic, nothing traumatic, no, nothing bad has happened to Darlene. It has just now been a month since my last post, this will probably be the time span between posts while Dar is at Kentfield Hospital.

Dar and I are so very fortunate to have two of the best doctors working for and doing everything they can for her. Doctors Doherty and Waters have been working so hard and so diligently on Dar's behalf it is amazing. These two not only have Dar as one of their patients but a whole hospital with patients in vey similar situations. Their hours are long, very long and the pressure must be crazy. Through it all they manage to keep me informed as to Dar's progress.

Doc Waters knows of my frustration in calling the hospital to get an update and has instructed me to "not" call during the week. I won't in most cases get an accurate or an update that will meet my standards. Not only are thes two doctors slammed most of the time, their support staff of nurses and "techs" are as well. I'm sure they would love to give me a play by play but they don't have the time nor is it right for me to expect them to. I know that if there is something I need to know or of they have a question, their going to call me.
Doc Waters has pledged herself to contact me as much as she can during the week, every other day or so. Sometimes it just does'nt work out. As I said they are both slammed.

I tell you these things so that you might understand that I like you sometimes am on the waiting end. Both doctors answer my emails, answer my questions and have been saints when it comes to Darlene. I do not receive info or intel unless it comes from one of these doctors, as it should be. When I get the information I do and will continue to pass it to you, it may just be longer in coming in the days and weeks ahead.

Doc D called me last Thursday and told me that Dar was looking beter than she had since her arrival back on the 6th of August. She also told me that she IS NOT READY to release Dar and infact wants to keep her another 3 weeks or so.

Doc D has been attending to the Baclofen pump and by all indications her effors are being rewarded Physical therapy has and is continuing to see the affects of the pump titrations. Doc D will continue to adjust as is needed.

Dar passed all three "blue dye" swallow test and is now with a deflated cuff in her trach 24/7, she also gets to use her speaking valve during the day.

This week Doc D is going to have another EEG done with regard to the Sub Clinical Siezures Dar was having, remember these are siezures you cannot see with the visual eye, they don't look like anything other than Dar is resting. The evidence is that Dar IS NOT her perky self.

Dar has her moments of Perk but they are not as they used to be and this is why both doctors are not ready to release Dar and indeed are still looking for ways to better bring Dar along.

The siezures and the brain bleed Dar experianced back in June really "kicked her in the butt", but we have no reason to think there was any lasting ill affects. It is just going to take lots of time.
I saw Dar on Sunday last and as doc D said she looked really good, just not her perky self. small smiles when Mav was mentioned, loves to play her "eye spy" game and doing everything she can to get well. Lots of sleep, lots of rest is what she needs, she has PT, OT, and Speech everyday. Sits in her chair we took down and is doing all that she can to get well.

Thats about all I can tell you to this point. Please understand it is not of my specific planning not to write, I am on the go from way before sunrise till way after sunset. Sometimes I even need to take just a bit of time for myself. I feel very guilty when I do but I have an ultimate responsibility to Darlene to do all that I can to protect her and care for her which sometimes means I have to take care of me. There is nothing I would not do nor nothing I would not give up to have her healthy and at home as she would like to be.

Until that happens, I will continue to fight the good fight, work hard and when an opportunity comes (scarse as they may be) for me to relax and get away, for what may be just a brief moment in time, I have to take it, guilt or no guilt. Dar needs me to stay on top of my game as well and not end up with a breakdown.

Until the next post please remember that we love you all and as "needed" information comes in I will pass it along. I am including my personal email so that if you would like to drop a note to me rather than leave a comment you may do so. Here it is.................. cntrydjpro@comcast.net

Doc D and Waters, we love ya both, thank you for all that you do!!!!!!!!!!!!!!!!!!!!!!!

Until next time,Love to all,

Dar/Danny/Jamiesue/Mav

" Dar Returns To Dr Doherty "

Darlene returned to the care of Dr Doherty and Kentfield Rehab and Speciality Hospital last Friday

The Harley is back, inspection of bike before going to Reno, Street Vibrations in Sept.

Just got home frome seeing Dar. She developed two blood clots in her legs. Yesterday she was at Marin General and had a "filter" placed in order to stop any potential clot from passing to the lungs, (embolizm). She is fine and Doc D is very pleased we got it taken care of. Next week she will go back to Marin General and have a Supra Pubic catheter placed and replace the Foley, the hope is that this step will cut down measurably the incidents of UTI's.

Doc D was awesome and very forthcoming with her time and plan for Dar, she turned up the pump a bit and will work on finding the magic number.

The staff also learned how easy it is to give Dar too much oxygen over a long period, in their effort to keep Dar's O2 sats at 98 and above they over did it a bit and she was retaining CO2,an ABG was drawn as I suggested and sure enough she was at 66, not bad but, enough to snow Dar, they pulled her off and put her on room air and within an hour or so she was waking up and starting to be a lil scamp, there was no reason for me to get upset for the staff just needs to know what I know and now they do. They all thanked me for my input and appreciated knowing all they could learn from us.

I will return un Sunday with Dar's chair and PT book of excersises and look forward to seeing a more alert and scampy girl.

" Vent is gone "

Call it coincidence, call it advocate thinking, for which I am kicking myself for not thinking of it earlier but, I suggested that Dar's trach be changed to a bigger size, it was changed last night and since 0650 this AM Dar has been off the vent and doin it on her own, YEE HAW, hmm, get more air with a bigger tube, dang, why did it take me so friggin long to put 2 and 2 together, had to help, so darn proud of Dar.

Pat on the back from Dr Verma, plan laid out for remaining week, all goes well, bay bound next week, time for a ride on the Harley, maybe cruise Oro ****, not!!!

Love to all,

Dar/Danny/Jamiesue

July 27, 2010
1000 Hours

Having been awhile since my last posting, I do not want you to think that things are going poorly, in fact it is just the opposite.

Since Dar’s seizures and the spontaneous bleed there have been some definite changes in her demeanor, attitude and overall personality.

Dar has been absolutely great, happy, talkative in her way, and most of the time a “little scamp”.

It seems since the most recent CT Scan that evidence of the recent “brain bleed” are all gone, disappeared, bye bye. The blood that was showing up on the previous scans is all gone and appears to have been absorbed by the brain, in fact the one area of concern way back in January has also disappeared.

Now then, do we have a clue as to what prompted the “bleed" the 3 seizures, no, we have no clue what so ever. Maybe just one of those things that goes unexplained.

Is it possible because of the seizures that areas of the brain that might have been somewhat docile were energized because of them, that too we may never know. What I can tell you is that Dar is acting and doing things now that we have been missing for a while now. Mouthing words in an attempt to say them if she had her speaking valve on. Her smile looks like a smile again as opposed to something that might have looked like a grimace.

Her willingness to participate in her own recovery is great, and again I find myself in awe of her.

We continue to turn down the Baclofen pump slowly with the hope that as we do it will help and assist her with the one area we are still having difficulty with, Dar’s respiration and ability to get off the vent.

Still on the vent, weaning continues. A week ago today Dar was totally off the vent and it stayed beside her in case of emergency, but was turned off. Dar went some 8.25 hours all on her own without too much difficulty. She rested overnight back on the vent but did not want anything to do with weaning the next day. We were convinced that we worked her too hard the day before. Since then we wean her a couple of hours at a time and give her a little break in between. This seems to be helping her when she is in the “spontaneous” setting of the vent. Spontaneous venting simply means that she is imitating all breathes on her own but gets a little support from the machine as she does it. In the event that she goes longer than 20 seconds the machine kicks in for her and takes over till she catches up.

“Assisted” breathing is when Dar is in full support by the machine but takes more breathes per minute than what the machine is set at. In Dar’s case when she is in the “control” mode of the vent, it is set at 14 breathes per minute and anything over that it switches to “assist”” mode which will show how many breaths over the 14 she might be taking.

The last day or so Dar has been in the “spontaneous mode much of the day, again all on her own but with a push from the machine and the safety net of the 20 second rule.

It is our plan and desire to have Dar off the vent as soon as possible and head back down to CareMeridian where doctors Doherty and Dawson await her arrival.

About a week ago I received an email from the California Brain Injury Association inviting me to attend their conference in November in Napa California. The CBIA is a non-profit organization that supplies information and support to families in situations similar to ours and of our close friends like the Murphy’s and the Spitzer’s. I felt honored to be asked and really don’t know quite what to expect but if I am able to attend it could be a new wealth of information and help for Dar and others that we might be able to share with. Thank you Cavi for your thought that I might benefit from this and be able to pass on that information but also that I might be able to contribute is some fashion.

Well that is pretty much what is going on here to this date, as we approach total weaning form the vent and get ready to journey to the bay area I will keep all of you posted.

Love to all,

Dar/Danny/Jamiesue/Margie and Maverick

July 9, 2010

0615 Hours

Posted a few seconds ago

Dar's assessment to return to CareMeridian for a "tune up" went very very well. Now we move to the clinical aceptance by CM which will not be an issue, they are really looking foward to having their "angel" return and helping her, then we wait for insurance authorization. Again I have to give credit to Jamie and Margie, it is highly documented in Dar's chart of the "remarkable" care that Dar receives, thank you both

Hey Kirk,

Was so glad to meet you today and spend some time with you. I am thankfull you took the time to come and meet Darlene and hopefully see how special she is to me and her family. She is the true meaning of an angel and a fighter.

Latest update is that Dar was more awake this evening than she had been all day. The CT scan was done and at this writing I have not heard anything from Dr. Rothfeld. I take that to mean that there is nothing of significance going on at this time.

Look forward to hearing from you in the near future, welcome to "Dar's Dream Team ".

Darlene/Danny

Posted 20 hours ago

Evening doctors,

Little update on Dar. She is out of ICU and now in the DCU. She has been off the vent and on room air for 3 days. She moved to the DCU last night.

Dar is still totally in a fog, I am thinking she is out of whack with her meds. She sleeps most of the day. When I can arouse her there seems to be no ill affects from the brain bleed. She still responds and answers all that is asked of her.

Her meds are as follows, Keppra @ 500mg twice daily, Dantrium @ 50 mg twice daily, Dilantin @ I believe 200mg twice daily, her baclofen pump is only @ 200mcs per 24 hours and the bolace feature is off.

We are getting closer to getting to CM, Kurt is coming tomorrow for an assessment(formality I hope) and I have spoken to Cavi just yesterday. I understand she and you doctor D have been in contact.

I have requested a CT Scan just prior to discharge so that you have the latest and greatest info regarding the condition of the "bleed". I hope this is appropriate and helpful for you doctor D.

I don't know exactly when discharge is planned but I thought it important to get this info to you as soon as possible.

I wished our return was abit more of a happy visit, but I am thankful that she will be back with you doctor D. I am sooo looking forward to getting her pump set correctly with you and doctor Dawson and her meds where they need to be.

I will keep you informed as things come to light. Exhausted and wiped out again I find comfort and new hope as we get closer to getting her to you, I've said it before, "thank you" will never be enough.

Danny

June 30, 2010

0600 Hours

Good morning to all of our faithful readers.

It has been a very emotional and trying time since the 18^th of the month. We took Dar to Enloe Med Center for what started out as breathing issues and low O2 saturations in her blood. It was discovered that she had a very nasty UTI again which began a strong regiment of medications.

The following Wednesday at 0245 in the morning I received a call that Dar was being moved to the ICU. Reason for this were not alarming because it seems that each time we go to the hospital Dar ends up retaining CO2 in her blood and has to go to the ICU and be place on the ventilator for a day or two. You would think that staff and her medical team would have learned by now that they have to be careful and watch Dar’s blood gasses. Or better yet listen a bit better when I make a suggestion regarding my suspicions of CO2 retention.

Later that morning around 0700 hours I called to see how she was doing and learned that Dar had suffered 2 Granmall seizures. I immediately left work and before I got there she had a third and was running a 103 temperature.

We later learned that not only did Dar suffer the seizures she also suffered what is called a “sub-arachnoid bleed with no vascular abnormalities in the left front lobe of the brain”.

We have been running the full gamete of tests and looking for answers ever since, I will say that Dar is doing better and I am enclosing some email information that I have been sending to her doctors in the bay area.

It has been a very difficult time for all of Dar’s family and again I am totally exhausted but things are looking up and we expect that there will be no permanent damage but it might take a bit of time to get Dar back to her previous level. Your continued prayers will go a long way toward that recovery.

I will try to put the emails in order so as to give you the best order of what has been going on. Here goes,

Good evening all,

As of this evening Dar's fever is back to normal, in fact it has been all day.

After discussion with Dr Park it was decided to NOT turn the pump up but rather treat Dar's spastic leg movements with Dantrium twice daily. I just called and her fever is still normal and the Dantrium is beginning to take affect. She is resting more comfortably. The choice to go Dantrium was made over turning the pump up so we might be able to better assist her breathing and hopefully get Dar off the vent quicker. It is my understanding that Dantrium does not have as much impact upon the repertory system as the Baclofen might.

Dar has been cleared for a head MRI tomorrow with a special team of medical personnel as she is still on the vent

Saturday morning there was a staffing change for the next week. Dr O’Brien, neurologist is now overseeing Dar's neuro needs and he has shed new light, concerns and thoughts as to what maybe going on. He is wanting the MRI because he wants answers as to why she had the "brain bleed" and is there something still going on. We have had Dr O’Brien before and he impressed me highly with his manner and concern, he remembers Dar well and wants answers to her current condition. He is not ruling out that we may have to have a lumbar puncture to rule out meningitis, or that there is still something going on in the brain causing problems. First and foremost is Dar's safety for the MRI and if there is to be a lumbar puncture

It is my plan to inform Dr Dawson of our current situation and make him aware that his input regarding the pump may be invaluable soon. Dar is showing symptoms of both "over and under dosing" of the pump.

Dr D, Dar was approved by insurance to return to CM but I don't know when that will be, I hope and pray that we will not have or find reason to remove the pump.

The Dilantin is doing its job, Keppra dose has been increased, her last EEG showed no activity, and we are now giving her Dantrium to decrease spastisity and aide her breathing so we might get her off the vent soon. Primaxin being given for her nasty UTI, and should be done soon.

As of this evening that's where we are. I hope to be able to give you a report regarding the MRI as soon as it becomes available and I speak with DR O’Brien tomorrow.

Thank you to all of you for your help with our " lil angel ".

Danny

Yesterday’s email to doctors below,

Afternoon doctors,

Dar successfully made it through the MRI yesterday, after a very long delay it was confirmed that the Baclofen pump reset itself and was working correctly.

After a couple hours fluid was extracted from the pump to send to the lab for testing to eliminate the possibility of meningitis.

This morning we got the results of the MRI; it showed nothing of significant concern that needed attention. It did show the "bleed" but appeared to be over, no change/difference from that of the CT and CT angiogram.

The in house labs of the spinal fluid were/ are negative for meningitis. We are still waiting for results of labs sent out of house.

Dar is still running a slight fever but has been on spontaneous breathing with the "vent" as back up since 10:00 am this morning. She will return to positive pressure at 6:00 pm this evening for evening and overnight rest. Tomorrow they will repeat today’s procedure.

I spoke with Dr Dawson at length and he feels that if we still have "neuro" concerns that we should consider UC Davis where they can address both the pump and Dar's "neurological" needs.

When the time is right for Dar to transfer to a SNF, be it from Davis or Chico, CareMeridian in his opinion is the "smart" choice. This way she will benefit from having both himself and you doctor Doherty collectively working on Dar's behalf.

Today is Dar's birthday and being the "selfless" person she is, I'm the one that got the birthday present. Today for the first time since the seizures Dar is not only breathing on her own but is also starting to follow some simple requests. She opened her mouth when asked to take her temp, will go to the "neutral" position to begin a question if her mouth is open, knows her name and will keep her mouth closed (no) till the correct name is said, to follow with opening her mouth and attempt to say yes. She will blink and close her eyes when asked and tries to "scrunch" tightly when asked.

As I said, her birthday and I get the present, so like her to not be selfish.

Dr Dawson does not recommend playing with the pump at this time till Dar is stronger.

That's what I have to date if you have suggestions or concerns please let me know.

As always we are forever grateful to all of you.

06-23-2010
0330 Hours



I knew I should have followed my "gut", just got call that Dar is being moved to ICU, for what you might ask?, C02 retention, I knew I should have followed my gut on Saturday last and pushed harder for an ABG, I knew somehthing was up then, she is safe, not in danger, we've been down this road before, but damn it I should have listened to my gut, or better yet, when are the "pros" gonna listen to my gut, prayers plz

Dar is hangin tough, still fighting that nasty UTI, probly the worst she has ever had, some nasty stuff in there. Have not even addressed the issue of low 02 sats in her blood,still on the trail of the nasty bugs. we celebrated our 5 anniversary on the 13th, hard to believe that we are comin up on two years this Xmas s...ince the Resp Arrest, she's tough and always a fighter. New trach put in today.

Love to all,

Dar/Danny/Jamiesue/Mav

"To All Fathers, Happy Fathers Day"

Sunday, 1443 Hours
I would like to say Happy Fathers Day to all the dads reading this today. To Dar's dad Alvin, a very special hello and I love you from your daughter.

Today is my first Fathers Day without my dad, if you recall my dad "passed" just 4 hours before I brought Dar home from the bay area last October. Next weekend a small group of family and friends are headed to Lake Almanor to have a special last tribute to dad at his favorite home away from home. Dad loved spending time at the lake and he and mom retired there 6 months out of the year for some 22 years. A fisheman at heart, probably where I got it, dad was his happiest at the lake.

I will not be in attendance but thats okay, some of dads ashes will be held back and although you may think it crazy I am going to keep them in one of his tackle boxes that goes with me whenever and wherever I go fishing. At the appropriate time and most likely with one of my best fishing buddies that also new dad we wil have our own little 'special time" for dad.

Dad was a trout fisherman, loved it, lived for it, next was setting his traps at the lake for crawdads. he loved making gumbo, and I have to say since I am allergic to iodine and shell fish, crawdad gumbo is damn good. I love it. Dad and mom would make me a batch just for me when they had crab feeds at the house. Good times.

There was one type of fishing that dad could not master, in fact he sucked at it, spent hours trying, spent lots of money on gear and tackle and never, never caught a BASS, I think in his own way he was envious of myself and my fishing buddy Elby for all the filets that we brought him. He did love his battered bass, just never caught on how to catch them. When dad sold his boat about a year before his passing he told me, "what do I need the damn thing for, Im gettin too old and its not safe', besides, "your gonna take me fishing and show me how to catch them bass". I so did look forward to taking him but unfortunatley our Father in heaven had other plans for my dad. I imagine by now dad has mastered the art of bass fishing and I keep him with me every time and everywhere I go fishing, so I feel it only appropriate that at some point Elby and I will release dad to the waters and fish that he so loved.

I miss you dad, I thank you for teaching me the rules and steps to being a good man and hopefully a good father and husband. I always looked up to you and respected you and have the utmost pride a son can have for his father. You are missed, you are loved, I know that you and mom watch down from above over all of us kids and protect Dar daily. I hope the fishing is great in heaven and you have the greatest time doing what you loved on earth, give mom a hug and kiss from all of your kids, Lorrie, me and Julie. Matt, Jamie and Vanessa send their love to grandpa. Mom, take good care of dad, Love, your son, Dan, preferably called Danny

We are still searching for answers to Dar's problem, chest xray is still clear, lungs sound good, very very little suctioning, barley enough there for a sputum culture but we finally got some this afternoon.
Dar does have a nasty nasty UTI, in fact it is one resistant to many meds and requires that we gown and glove up when with her in her room. The simpliest way to describe it is that she has some Ecoli bacteria in her urine, don't ask me how, I/they could not beginn to tell us how or where she got it. She has had it once before, it is treatable and is not something to get "freaky" about. It's just something that we will treat and move on.

Today her nurses and respitory folks were able to see first hand what we brought Dar in for. After taking Dar off O2 and putting her on room air they were able to see that she is not holding her oxy sats as she should. Could it be related to the UTI, you bet, could it be something else, maybe. Are we gonna find it, damn right, just might take a bit of time. I don't know how long the new med will be for the UTI but I'm sure Dar will be watched closley.

Another chest xray was order as I was leaving, the sputum culture is off to the lab, the new UTI med is going to be started shortly, now we wait, watch and pray.

Dar is in great spirits as she always is, a true testament to her faith and will to be all that God intended her to be. A super lady, a super friend and yes, a super wife. I give you this, Darlene Lee Mardilla is in the house, aware of all that goes on, ready to put in her two cents, always ready for a good laugh and one day folks, mark my words, she is gonna be ready to get up out of that bed and kick my butt for all the silly stupid things that I have said and done to keep her spirits up. Man, I can't wait for that day, in fact I will cherish it.

Well thats whats up as of this moment, I ask you to continue to pray for Dar, the angels look down from above, please send your prayers from here on earth. We thank you and again to all the dads and fathers,,,,,,,,,,,,,, Happy Fathers Day to all of you.

We love you all,
Darlene/Danny/Jamiesue/Mav/

06-17-2010
0630 Hours

Well, since our last posting, school has ended for the year and the students now begin a summer of fun in the sun.


Immediately following the last day of school I headed up to Butt Lake with our travel trailer and bass boat, even threw in the Fishcat float tube. This was the first time in over 18 months that I would leave Darlene for any great length of time, more importantly it would be the first time I was doing something for myself. Returning to places that we have so enjoyed together, I was not sure how well I would handle it. A couple of my buddies had planned on staying a few days but due to circumstances each was only able to come up for an overnight stay. Elby pulled our bass boat Saturday morning with me and, Joe came up on his new Harley Saturday afternoon.


Joe stopped off at the Peninsula Market at Lake Almanor and picked up three of the best rib eye steaks you could ever sink your teeth into. The Market has a little butcher shop that has become a favorite for Dar and I when we camp at either Butt or Lake Almanor.


Needless to say Saturday night it was a feast to behold, nothing better than an open fire and great food and a couple of great friends to enjoy it with.


Saturday evenings fishing left a lot to be desired, the wind blew like a big dog but our spirits were not halted as off we went in search of that “big toad”. We did not find the really big one but we were successful in coaxing a few to the boat.


Sunday proved to be the beginning of a tough week for Dar.


I wonder how we survived for so many years without cell phones, Internet and computers. Now that I have become an electronic gadget junkie, I wonder if I could survive a week without my blackberry and the internet. Both proved to be invaluable for the remainder of my trip.


Sunday morning I got a text message from Jamie that Dar started having bladder spasms, pretty severe I might say. We have been here before and it always seems that Jamie is the one that gets hit with this all to demanding situation.


As the spasms continued it became apparent that they were not going to cease any to soon. Jamie was a very busy caregiver for the remainder of the week. Changing pads as much as 16 times in a given day. We were able to contact our Urologist and Ditropan was prescribed, little did we know at the time that it would take about 4-5 days before we would see positive results. Jamie, the rock that she is was a knight in shining armor, always ready and faithful to her step mom. I have to say that Dar did not and has not experienced a skin break down because of the spasms.


By the time I returned on Saturday Dar was beginning to have some positive results due to the medication. Saturday was pretty much a dry day as was the night. Jamie and Scotty, also invaluable for support and errands returned home Saturday afternoon.


Sunday started out pretty well but by the afternoon the spasms returned in force and I was very busy for the remainder of the day. I made a call to Home Health looking for some answers. I attempted to flush the “cath” with no success; at this point I had but two choices. Remove the cath or leave it in and allow, “build up” in the bladder, not a good thing to have. I elected to remove the cath and prepared for a long night. Margie was gracious to come in about 9:00 pm so that I could get a little rest before heading back to work on Monday morning.


I have to say that once the cath was removed I found the source of all the problems of the week. It was definitive that once the cath was removed, you could see that during the course of the week it was plugging up. By Sunday when I removed it, it was plugged so solid you could not push water through it with a 60 ml syringe.


Monday, Home Health came out and replaced the cath and we have been dry and off the Ditropan ever since, such a relief to see Dar more comfortable.


I am attempting to have Dar return to CareMeridian for a period of about two weeks so that she can see Dr Doherty and Dr Dawson a few times. Doctor Doherty believes it is a great idea. Now we have to get it approved by Blue Cross. In as much as we start a new Benefit Insurance Year July 1st we receive 100 skilled nursing facility days. It has to be medically necessary and it may prove to be somewhat difficult but this may be the only safe way to get Dar to the Bay Area. Kurt Davis from CareMeridian is coming to the house to evaluate Dar and do what he can do to present our case to Blue Cross. Kurt has spoken to Cavi Von Husen from the Fairfax facility, and gotten some very good information regarding Dar’s situation and need to return and see Dr Doherty.


Kurt and I have spoken and we are gearing up for his visit on Wednesday.


Darlene also is now beginning her daily therapy of her Dyna Splint arm splints. It took a few phone calls to the corporate office and $1500.00 bucks out of our personal savings account but Dar will hopefully soon begin to see the positive results of the splints.


It seems way back in the day when Dar had her leg splints, (a total success I might add), at some point Blue Cross denied payment to Dyna Splints because the splint were not medically necessary and she was a and I quote” patient without rehab potential”. I remember that quote all to well but it got filed away with many other letters and such.


Well to make a long story short, Dyna Splints appealed and I too appealed the decision by Blue Cross. Both of us from different angles but both of us supporting our case that Dar’s use of the leg splints was the only reason we enjoy full range of motion and all in her legs, phooey on what Blue Cross thought, we have the proof.


In addition to the appeal Dyna Splint Corp and I came to an agreement that I would pay the balance owed and clean up the past due and when and if we won our appeal and Blue Cross paid Dyna Splint, I would be reimbursed


Felt a bit like we were being held hostage but that feeling went away very quickly as it was more important to get Dar the splints as soon as possible.


Dar wears the splints about an hour a day at the present time and it will take some time and effort on her part to get used to them. We are all looking forward to positive results in the future, oh oh almost forgot, these splints are being submitted to Blue Cross as DME, durable medical equipment, so these splints will belong to Dar and not be rental splints.


Before I add the last bit and most current news I am going to touch on a touchy subject. Touchy to you the readers evidently and definitely touchy to me the writer.


Folks there are only so many hours in the day, I am bustin my hump most all of those hours for Dar. I have no real down time; I have no transition time from work to taking care of Dar. When I got home from my trip, I had time to spot the trailer, unhook, pull ahead, grab an arm full of gear and go inside and start taking care of Dar.


That’s the way it is around here, go, go go. I apologize that sometimes its long between posts, sometimes there is not a lot going on and sometimes I am just to tired to put in the effort. An excuse, probably, but similar to those of you that don’t want to take the time to fill out a bit of information about yourself and leave a comment or thought of encouragement with a “your” name instead of “anonymous”, so impersonal.
Ok, I’m done with this. I said how I feel; you’ve said how you feel, “let’s move on”.


Yesterday, Dar was admitted to Enloe. She is in room 220, it is not clear if she has pneumonia or not but we are being very proactive to prevent it.


She does have a definite UTI again, her chest x-ray is clean and clear, her breathing is very clear and unobstructed, but she is not holding her oxygen in her blood. In other words her o2 sats are very low.
Jamie, Margie and I have all been staying in touch with Dr Verma’s office over the last few days and yesterday morning Margie returned a call to the doctor with the morning “stats” and it was decided that Dar needed to head to the ER.


Dar was in good spirits all day yesterday and was resting well when I left late last night. I will be heading over later this morning. I am not worried at this point at all and very pleased that I have a staff of help that not only love Darlene, but they all ago that extra mile for her every day. I’m not just talking about Jamie and Margie, I’m talking about all of our “team”, doctors, nurses, pharmacy, home health, everyone, all of you, thank you so much for what you and they all do. This marathon would not be what is, without all of you.


In closing, if I have offended or hurt any of you, I go on record now that that was not my intention and I apologize if I did. Just asking you to bear with this, "this is a marathon, not a sprint"

I wiiiiilllll write again, I wiiiiiiiiillllll try harder,


Love to all,
Dar/Danny/Jamiesue/Margie/Mav

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