"From the Heart"

Sunday February 28, 2010
0719 Hours

Good morning to all.

It has been awhile since our last post. Not that there is anything wrong, quite the opposite. Darlene is doing very well.

We have been to see Dr. Arrogonte twice for pump titration and Botox injections for Dar’s arms, fingers and hands. Dar has been back to see Dr. Verma for a follow up visit to check her lungs and he has given her a “thumbs up”. He also wrote a script for Prednizone in the event that we might suspect something brewing.

This coming Friday, Jamie and Margie will be taking Dar back to Rehab to see Dr. Arrogonte for pump titration and with the help of Rod from Medtronic’s, Dr. Arrogonte is going to set up the bolace feature on Dar’s pump.

This feature will give a prescribed “boost” of Baclofen during the day so that Dar will have less “tone” and she will not have the side effects of the oral Baclofen we are giving her now.

We are excited to have this feature added. I had spoken to Dr Dawson about it and we thought it a good idea to present the idea to Dr Arrogonte. Amazingly, when I brought it up at our last visit, she was already thinking the same thing.

The last three week Dar has been fantastic, her attitude is great, when she is relaxed, usually just after she wakes up, she can speak a few words and even a short phrase.

Margie has been a very valuable addition to the team. Jamie is taking care of mom Monday-Thursday, Margie comes in on Fridays and every other weekend. After we have an additional form signed by Dr Verma we will get additional hours that can be assigned to and used for more help. I received a call last Wednesday from the State about our application for an IHSS waiver. It was a short telephone interview regarding Dar’s needs and limitations. The next step is the actual formal review. If we are granted this waiver, and it may still take awhile, we could get even more help around the clock.

The Dynavox computer has arrived and I have been able to spent some time looking into it’s software and programs. At this point we are lacking some important features, or maybe I have just not found them yet.

I have found the “access switches” and to my dismay there is not a “blink switch” of “mouth switch”. Wendy, from Dynavox is actively searching to find the appropriate hardware or software so we can continue with Dar’s training.

The actual programs on the computer seem to be geared more toward children and those that have their sight. Again, I am still looking and searching through its programs.

It has been very exciting these last three weeks having Dar home and so full of life. She is an amazing woman.

Steve and Tammy stopped by Sunday before last for a short visit; Dar was so excited to have friends stop by. We did get a scare from Maverick. I had taken all of his “jewelry” and bandana to give him his shower just as Steve and Tammy got here. Well, the little sneak, knowing he could not be heard snuck off and took a field trip through the neighborhood. We did not notice him gone for about 45 minutes. Well, this started a search for about an hour through the neighborhood. Dar was in tears, I was upset, Steve is driving all around the neighborhood, and Tammy is watching Dar while I drive around. Well I finally spotted the little “sneak” having a great ole time down the street running around visiting the neighbors. I just happened to get a glimpse of him as he darted across a driveway. Needless to say when we got him home and cleaned up, he goes nowhere without his “jingle jewelry” and dog tags Dar was very relieved to have the little “pud” back where he belonged.

There has been something weighing heavy on my heart, I have tried to sort out the feelings. I have spent hours trying to make sense of how I feel, am I wrong, am I being petty, am I just …………….. , I don’t know, but here it is.

If I have learned anything since December of 2008 it’s this.

Dar’s and my life at the time was like a beautiful mountain forest. Everything for the most part was just beautiful, we were healthy, have a home we both enjoy, work, and friends we love and spent time with.

Then, one day the unheard of happens, something so totally unexpected, so life changing.

A raging fire came through our “perfect” little forest and just ravaged our lives. It in many ways destroyed everything we have worked so hard for. This fire has changed our lives forever; it has “detoured” us and “derailed” us from what and where we thought we were going.

But as I look out the front window of the house we still have, the toys in the yard, the work I still do, the health we both still have, the marriage we still cherish, I ask myself, what’s missing?

I am so thankful, I have been so blessed, and God has shown me so many miracles. I have no reason, no right to feel the way I do sometimes, it is wrong, I’m being selfish, I being jealous, envious, petty, a whiner. I should not be missing anything but yet I am or at least I think I am.

My view of our “forest” has changed; the trees that we surrounded ourselves with are different. Some have been destroyed; some have died and gone to heaven. Some have just moved on.

But, as I look further into “our forest” I see some trees are still standing, not wavering and even as I look deeper I can see the “sprouts” of new, growing trees.

We miss our friends; you all mean so much to us. We love you all, and I apologize for this brief “pity party”, it is my hope that as I am given the chance to “pay it forward” I will bring honor to God and my/our friends.

At the end of the day, what do we have?

“Our faith, our family and our friends”

My prayer, my commitment to you my friends,

“I will do all in my power to be the best friend I can be to you at all times and especially when you need it most”

We love you all and hope you have a super Sunday.

With all our love,

Dar/Danny/Jamiesue

02-13-2010
1041 Hours

It is a beautiful day here at the house. The sun is shining and Dar's hummingbirds are busy retrieving nector from the dispenser I promised Dar that I would keep it full. The little things that I can continue for Dar have meant so very much to her.

Yesterdays visit to Rehab was good. Dar's pump was turned up ever so slightly. We went from 215 to 230, all in an effort to go slow and keep a vigilant eye on resperation.

Dr Arragonte then proceeded to give Dar her botox injections in her arm muscles that control her fingers and wrists. It is quite amazing to watch the procedure.

Dar being the tropper she is, toerated the several injections into specific muscles. These muscles are located with what reminds me of a gieger counter. All found by movement of fingers and wrist and listening to changes in the machine Dr Arragonte is able to locate the problematic muscles. Thenn she injects the botox. Over the next 10-14 days we will see the results begin to take place. The rewards will last about 3-4 months. Already this morning Dar is a bit more limber.

This morning Dar is resting peacefully, she may sleep a bit more than usual inlight of her pump being turned up yesterday. We are still giving Dar oral amounts of the Baclofen to assist with tone and spasticity when needed.

Last night after reading a chapter of her Hank book I told Dar that I would read more later and if she very quietly said the word Hank, this way I would know what she was asking. About 30 minutes later I could see Dar was trying to say something. I asked her if she wanted me to do something for her. She mouthed the word yea and tried to speak it but chokes it off because she tries so hard. I encouraged her to try to say what she wanted softly. I asked her to go to the neutral position and try again. Next thing I new she very softly said "Hank". She was so proud of hersel, as was I that we bothed laughed and laughed. She continues to amaze me daily.

Dar's new Dynavox Vmax was delivered yesterday as well. We have learned that we still need an "access switch" and for whatever reasons are having trouble locating one. Dar either needs a mouth switch or a blink switch. The mouth switch would activate the computer when Dar opens her mouth. The blink switch works when Dar "scrunches" her eyes.

It is my understanding the software is built into the computer but Dynavox does not make the switches to run the computer. We can still practice with the computer if I ask Dar the questions and use the touch screen to activate the catagory she wants to talk about. I hope to be able to play with the computer a bit today.

If anyone wants to do some computer hunting for us we are looking for access switches for the Dynavox Vmax communication system. Specifically a "blink or mouth switch".

We want to wish everyone a Happy Valentines Day tomorrow and hope you have an opportunity to get out and enjoy the sunshine.

Love to all,

Dar/Danny/Jamiesue

"Outpatient visit today"

February 11, 2010
0600 Hours

Good morning to everyone. Call it superstition, call it “don’t burn your bridges” or maybe even “don’t mess with the man upstairs”, but I made myself a promise many months ago I was not going to use Dar’s blog site to “bash” or “go off” on those persons taking care of Darlene. Maybe something my mom and dad always said to us kids when we were growing up is still with me today. “If you don’t have anything nice to say, than say nothing at all”.

Since the beginning of this ordeal I have learned that getting angry and verbally nasty with the very people that are taking care of Dar is not such a good idea. One of the most important lessons and daily tools I left with after attending the police academy was to be polite, be respectful, I have found that I have gotten more attention when it comes to Dar’s care, just by being polite.

This is not to say that I have not been angry, not been upset, trust me, I have been, on several occasions. But even in the midst of being that angry I have found that you can still get things done. I know even better than if I was rude and nasty. I have always said to Dar’s caregivers that I will always be polite, I will always be respectful but if someone has a butt chewin coming or I want something done a differently, their gonna hear about it.

You’re probably wondering, “where is he going with this”, well it has taken me this long to settle down from the day’s events since Monday noon. Lets just say that the first few days of this week were not real good around here. Speaking for Jamie and I, we can say that as flawed as our medical system is, I am so thankful that we are capable of getting the quality of care that we do in this country.

It comes at a price though, if we as the “advocate” for a loved one do not step up to the plate and be ready to do battle with anyone that might hinder the care given to that loved one, than we loose. It means you do research, you don’t trust everything that is being said until you check it out, it means that we as the “advocate” step up and become “proactive” not “reactive”. In simple terms, we become the “mouthpiece” for our loved one, in my case one that cannot speak for herself. I truly believe that because I have chosen a proactive, respectful, polite approach to Dar’s care, God has honored that choice/decision. It also means that you might loose a little sleep and you might have to give up a few things.

We have seen and been a recipient to so many miracles for me to disbelieve what my mom and dad taught us kids, what I learned in the academy, what I learned on the streets, but more importantly what God has shown me every day. He is in Dar’s life, He is doing the work that needs to be done, I get to see the miracles everyday.

Well, maybe you can read between the lines and see how emotional this week has been for Jamie and I. It was horrible in the beginning but now it’s Friday, we are headed to Chico this morning to meet up with Dr Arragonte for “pump titration” and “Botox” injections for Dar’s fingers wrist and hands.

Dar has continued to get better everyday since coming home. Suctioning is decreasing, her spirits are great, and she had a visitor yesterday, Sherry and her granddaughter stopped by for about an hour. It brought much joy to Dar to have a visitor..

Yesterday, Dar had her first physical therapy since coming home on Tuesday; Lynn brought our new PT Guide Book, made especially for Dar. Bonnie put the book together before she left to be with her mom for a month or so. Bonnie is Dar’s PT therapist that has been so proactive for Dar. She has a lot of good ideas and has made it very easy for anyone to work with Dar.

Margie Hensley will be working with us beginning next Friday, she will be taking care of Dar each Friday and every other weekend during the day. This will allow me some time to R/R myself. Margie and her husband Mike have been part of our “extended” family for years, long before Dar’s accident. Mike is our “IT” tech here at home and a very good friend. We feel so blessed to have Margie become a big part of Dar’s Dream Team.

I will still be taking care of Dar all evenings and overnights. Jamie continues to be the best daughter a father could ask for. She is absolutely awesome when it comes to her step mom.

Still have not figured out how to have some “companion sitting” during the overnight hours as of yet. The hours that Jamie and Margie work are compensated by the IHSS program through the county. We were awarded 227 hours of outside help per month. Those hours will increase to 282 (one hour less than the max) once we have a form filled out by Dar’s doctor next week. When that happens I might be able to look at some overnight help, we’ll see. In the meantime if you have an idea let me know.

I hope and pray that none of “our” friends and family ever have to go through something like this, but if it did I pray that I might be able to “pay it forward” and be an instrument in their journey. A tool that can be used to make their burden just a bit less “over whelming”. I continue to pray daily that all of our “new”, “extended TBI families” continue to receive the blessings they so richly deserve.

Given the opportunity this afternoon, I will let everyone know how our visit to Dr Arragonte goes today. Until then, we love you all and hope you Friday is a great one. Please keep Dar in your prayers and thoughts. We love you all and thank you for all that you do.

Love to all,

Dar/Danny/Jamiesue

Dar is home

Well, after much tado Dar is home once again, only to find out they pulled her Foley. Guess you know what I did, BALISTIC, very nice nurse from Enloe Home Health brought one from Chico and all is better. I'm beat but Dar is once again sooooo glad to be home, prayers that she begin to get stronger in the coming days. Pl...ease keep her in your daily thoughts.. Love to all


Will post more details tomorrow,


Love to all,
Dar/DannyJamiesue

February 6, 2010
0430 Hours
As of yesterday evening Dar’s status continues to improve slowly. Dr Verma finally made contact with me as I was driving home. There has been much frustration from certain case managers that key players in Dar’s Recovery have not been communicating with me, as they should.
Today we begin taking some new step to move Dar toward Rehab early next week. Dar will be weaned from the oxygen slowly beginning today and her “cuffed” trach will be replaced with the #4 cuff less she is accustomed to and has had for so long previous to this recent set back.
I believe this will boost Dar’s spirits a great deal. This trach replacement will also allow Dar to have her “speaking valve” and she will be able to participate in conversations. as “she” is able. This means so much to her.
I have been doing a lot of hunting and research with regard to the communication device you have been reading about. The Dynavox System will aide Dar and give her an alternative and more complete way to talk with us and tell us how she feels or what she may want.
Many people have been feeding me with information and places to contact. I am glad to say that yesterday I received a call from Katie at the California Independent Living Center in Redding. Katie and I have been talking for a few days now and have been working with Wendy Quinn from Dynavox to decide what system would best benefit Dar.
Katie called late yesterday to tell me that she and Wendy have hopefully come up with a plan and that Katie will be bringing a machine/computer down to loan Dar as long as needed to get her qualified for her own machine. This huge step could have such an impact for Dar. Upon arrival, all the players, Wendy, Katie, Jennifer, myself, Jamie have much to do and learn. This computer may be such a benefit for Dar as we wait for her vocal cords to heal and relax. This machine, called the Dynavox Vmax apparently does it all, email, web browse, play music, read to her, ask questions for her that she can answer. Its capabilities are as I understand, limitless and only stifled by ones lack of imagination.
All controlled by different access switches, Dar would use the “blink” switch built into the program software of the computer. As Dar navigates through the computer programs she will blink to stop and isolate a certain subject to talk about and then move through the subject matter.
This morning I am off to find more Hank the Cowdog books and Costco to stock up on household supplies. Ashley comes tomorrow and we will attack the house and give it the “once over” maybe twice, three times sterile cleaning while Dar is away.
Have a great day and have lots of chips and soda on hand for tomorrow’s game. I will post again later today or tomorrow morning and let you know how Dar’s day goes today.
Love to all,
Dar/Danny/Jamiesue

"There Is Hope On The Horizon"

February 3, 2010

0635 Hours

Good morning to everyone, Dar continues to rest and recuperate. I am still concerned that there is something still aloof. She is not experiencing any fever during the day and she appears to resting well, but just does not appear to be her usual “perky” self.

I can only imagine that she does not rest as well in her room as she does at home. There is always activity in and about her room; she has her moist air being constantly fed to her trach, which is forever making a swishing sound all day long. Would make it hard for even me to get restful sleep. Add to the noise of her equipment there is always some activity going on around her. Seems like the hospital is extremely busy these days.

We did get some news yesterday that I believe will be of help in the immediate future. I heard from our IHSS worker yesterday afternoon that she is processing Dar’s hours of “care” that could be provided Dar by “outside” help. Dar will receive 227 hours per month to start off and when we get her “paramedical” application completed she will then receive 282 hours per month. By my research and understanding of the IHSS program the maximum amount of hours that can be assigned are 283. IHSS does not pay for 24 hour around the clock care. All said, this would be of great benefit to Dar, Jamiesue and I. This will allow Jamie to have a set schedule, and we can begin to set up a regular “shift schedule”. I am already “crunching” ideas and schedules. I am “brainstorming” something along the lines of Jamie working 4 ten-hour shifts and hiring another “worker to work 3 twelve hour shifts every other weekend. By doing this it could avail me the opportunity to have a Saturday and Sunday every other weekend to rest and recuperate myself. Its all a numbers game and we will have to put all of our ideas on paper and decide which one will work the best for Dar and those taking care of her.

I was also given an idea yesterday that I am running with that maybe some of our local readers may have some input. It was suggested that I contact Butte College and inquire about the possibility of “picking” up some help through the Nursing Program. Maybe there might be an individual that would consider “bartering” help for Dar in exchange for room/board. Although our house is small and I would like to keep as much privacy for Dar and myself, we do have our 30-foot travel trailer that is on our property that could be used for “sleeping and study” quarters. Fully self contained and could used to save the “right” nursing student rent in their present situation. It’s an idea that we will have to “ponder”. We have a need but also may have something to offer that “special someone”. If you have an idea, please, please get in touch.

We have not heard any talk of discharge and I am still hoping that we will spend a little time at Rehab before coming home again.

Dr Park saw Dar yesterday and with discussion with Jamiesue and I we decided to “not” turn Dar’s “pump” up at this time. Dr Park wants Dar to be free of the pneumonia and at her best when the pump is turned up again. He does plan on returning today to refill the pump, as it will be due in just a few days.

Again, I would like to thank everyone for their prayers and support for Darlene. One thing is very clear, when the decision to bring Dar home was made, neither Jamiesue nor I thought that it would be so intense and yes, draining. It has been a learning and sometimes all to frustrating period these last few weeks. My prayer would be that in the weeks to come Dar would continue to get stronger, build up her defenses, and the appropriate help will find its way to us. Please continue to pray for all of us, we need all the support we can get. Thank you all.

Love to everyone,

Dar/Danny/Jamiesue

Update, as of 1600 hours, we learned that Dar will going to Enloe Rehab again for a short stay after she gets rid of this stinking pneumonia. Yes, she still has it and that is what I was seeing yesterday while I was there. I knew something was just not right. Darlene is just too easy to read, I guess that is a good thing.

Dr. Park refilled Dar’s Baclofen pump this morning also.

Stay tuned.

Danny