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
Friday, December 17, 2010
Thursday, December 16, 2010
December 16, 2010
Evening all,
9.5 hours today, !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Go Dar !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
9.5 hours today, !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Go Dar !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Wednesday, December 15, 2010
" 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
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
Sunday, December 5, 2010
" 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
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
Wednesday, October 13, 2010
" 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
Friday, September 17, 2010
"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
Wednesday, September 15, 2010
" 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
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