" 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 "