1735 Hours
New Years Eve

Well I am glad to report Darlene has had a great day today. 4 plus hours in her chair, time in the gym, pudding for treat, laughter galore.

We don't have a answers to some of our questions but there seems to be some things that are different this time at rehab.Dar is doing things different from when she was here last. Kerry from speech therapy has noticed it too. All good things and I guess we will just accept them as gifts.

Dar and I were talking to a fishing buddy of mine on the cell earlier and Joey asked me if I wanted to go fish part of the Feather River that opens for steelhead tomorrow. Before I even got a chance to check with Dar she had a big grin on her face. Yep, she told me to go fishin tomorrow for awile.

It has been a pure joy to see her more like her regular self. I am so thankful. Well I will talk to all you folks tomorrow and give ya a fishin update, or at least a big fish story. Happy New Year everyone,please drive safe.

Dar/Danny/Jamiesue

"Happy New Years Eve"

December 31. 2009
0730 Hours

Good morning all, and Happy New Year’s Eve

The last couple of days have been relatively uneventful. Dar Continues to rest and heal from all of her recent ordeals.

Therapy continues and Dar has been enjoying some pudding and yogurt every day. Yesterday she really enjoyed the strawberry yogurt.

There was talk of discharging Dar today. I learned this on Tuesday. It seems that it was the opinion and thought that Dar was admitted to Rehab to continue and stabilize from the phenomena. I quickly reminded the “powers that be” that Dar was admitted back to Rehab not only for that but also more importantly to have her pump recalibrated. After our recent scare, I was not going to have her discharged prematurely. I also called my insurance case manager and gave her this new information. Camellia jumped on her horse and did what she has done so well for Dar and I. Yesterday Camellia and I spoke and I got word that more days had been requested to continue Dar’s stay.

Since Dar’s admit to Rehab her pump has only been turned up once. She was at 140mics, now she is at 150. You can now see how premature it would have been to discharge Dar today. We still have a ways to go.

I had a short conversation with Dr Park yesterday and he told me that Dr Filbrandt would be back today. I hope we will now be able to begin to put a definitive plan together regarding Dar’s titration.

Last night Jamie, (Dar’s nurse) called with exciting news. She was calling to tell me that Dar was laughing about something and was just having a great time. This is exciting in that we have not heard from Dar since the 10th of December. I told Jamie that if she put Dar’s speaking valve on she would really get a treat. Jamie did and was given a special treat.

Well, got to get ready to head to the Rehab, will hopefully post and update this post later today. Check back, and we hope you have a great New Years Eve

"Jackson Trach Short Lived"

December 29, 2009
0600 Hours

Darlene and I had a really nice Xmas. Dar slept much of the day and I worked on her book. I started blogging on Dar’s behalf last December. A year has now gone by and I found a program that enabled me to put all of Dar’s blogs into a single hardbound book.

I was able to put a front and rear cover photo and include all of her pictures and your comments. I included a dedication page to Dar and some of our new friends that find themselves in similar situations.I have sent some folks a copy of the book by email. The program allows you to preview the book and even purchase a soft or hard copy if you so desire. It is all up to you, if you did not get an email and would like to receive a preview let me know. It is my hope to be able to share this journey with Dar in the future.

In a recent post I told everyone that Dar’s old trach had been replaced with a Jackson #4 cuff less. In that post I also said that Dar was for the first time breathing through her nose and mouth for the first time since last year. This has always been a goal and hope for me that she would be able to have her trach removed, I had hoped this was the beginning of that goal being accomplished.

If you recall the reason Dar still had her trach was because her vocal cords have been in what they call “spasm”. Not always opening completely when she takes a breath through her nose and mouth.

When I got the call from the nurse before Xmas that Dar’s trach had been changed and indeed plugged I immediately freaked. I reminded them that her cords were in spasm and that she also had sleep apnea. I was assured that all steps were being taken to insure Dar’s safety. And indeed they were, Dar handled the transition very well,,,,,, until Sunday afternoon.

I had gone over earlier in the day to see Dar. Not feeling well still, I left around 10:00 and stopped by Barnes and Noble to pick out some books we could read to Dar and then I made a quick stop at Costco before returning home.

Jamiesue and I spoke and I must have got my wires crossed and I thought she was going to stop by the house and pick up the books before going to see Dar.

Jamie call shortly after my return home to tell me that Dar was experiencing some breathing difficulty. Her o2 sats had fallen during her “treats” and they were concerned. You must understand that with the Jackson trach you have but 2 choices; plugged (capped) or unplugged. Only when the trach is capped is Dar able to speak and hear herself. And, when the trach is capped (plugged) she is forced to breath with her nose and mouth. This trach is not anything like her old one. With the old one we could put her “speaking valve” on and we could hear and Dar could talk when she desired. We could also remove the valve and she would have a larger airway to breath with. The idea of the speaking valve is that Dar can breath through the valve and the air does not escape from it when she want to talk or laugh. The air not escaping is what allows the vocal cords to vibrate, thus we had sound from Dar.

Well, when Dar started to “desat” and I got the call from Jamie I knew what had happened. I knew it immediately; Dar’s vocal cords had gone back into “spasm”. I was 100 % sure I was correct. I spoke with the doctor on call that day and shared my knowledge and suspicions, he agreed I “might” indeed be correct. As Rehab is not set up to deal with these kinds of situations it was thought that a trip to the ER was in order.

So,,,,, at 2:00 I returned to Chico to spent the next 5 hours with Dar in the ER. The “techs” took x-rays, drew blood and watched Dar’s o2 sats carefully. Dr Welm, a pulmonary specialist and partner with Dr Val and Verma thought that a “bronc” was in order. This would allow him to look at the trach, her lungs and her vocal cords.

X-rays and blood tests looked good, but again Dar’s C02 stats were a little high. Dr Welm got prepared for the procedure and as I have been here before I too was ready to look on.

Dr Welm started his exam and things looked real good,,,,,, until he got to the vocal cords. As I suspected you could plainly and visibly see Dar’s vocal cords had gone back into spasm. In fact they were barely opening when she would try to breath through her nose and when she exhaled, not having any air in her lungs she could not make a sound. In fact, now that I think about it, prior to this whole ordeal you could hear Dar’s vocal cords when she would take a breath inward. That’s how closed her vocal cords are.

Dr Welm took pictures (I have copies now) and we discussed our options, well really only one acceptable option as far as I was concerned. We could leave the Jackson trach in and keep it unplugged. This would not allow us to hear Dar laugh or allow her to talk when all was good with her cords, or, we could switch back to the trach we used to have and use the speaking valve to let her talk and laugh and breathe through the valve and speak or laugh because the valve does not allow the air to escape.

As far as I was concerned it was a “no brainer”, “switch the darn thing and lets get back to rehab”, Dr Welm agreed. So, we now have a Shiley #4 cuff less, disposable inner cannula, and Dar is using her “speaking valve” to communicate with.

Dar and I returned to Enloe Rehab 7:00 that evening.

Although it was nice to have Dar breathing in the correct manner, this is something that we have to let time run its course. I hope that in time her vocal cords will return to normal and we will be able to get rid of the trach but for the moment this is the safest and best way for Dar to breath.

We now begin the search for answers as to whether or not this will affect her “treats”. If the vocal cords are in spasm the question now comes up as to whether or not the food could sit on top of the vocal cords and thus make it possible for Dar to aspirate. Kerry from Speech Therapy is looking at all the information and also the video swallow test that Dar passed recently. Again, time will tell. I will keep you all posted as things develop.

Dar spent a very restful night Sunday, her o2 sats were 100%, and when I arrived yesterday morning to see her briefly before a meeting, she was very happy and looking forward to Jamiesue reading stories out of her “Chicken Soup for Cat Lovers”.

Jamie from P/T worked with Dar for a while and Dar was even participating with “purposeful” movement in her arms. Although slight, this is good news since her pump has been turned way down. We pray that these little steps will continue.

Jamie called me later in the day yesterday and informed me that Dar’s pump had been turned up by 10 mics. She went from 140 to 150. Increases being taken very cautiously this time, I am very appreciative of that. Jamie also told me that Dar’s room has been changed and she is now in room 809 B, Enloe Rehab.

Well the New Year is approaching and I will be spending it with Dar as I did last year. Dar and I would like to thank all of you again for your prayers and support this last year. Our journey continues and Volume 2 of Dar’s Recovery, “A Journey Back To Life” began on December 26, 2009, we so appreciate you following Dar’s recovery and hope you will continue. We appreciate your comments and words of encouragement. Again to Angels Among Us, thank you for all of your special gifts, they continue to arrive and watch over Dar.

To our friends and family in similar “trials and triumphs” we love you and miss you and hope that the New Year will bring us all closer together and rewards for our loved one. Stewart’s, Murphy’s, Spitzer’s, Riemer’s, may God watch over all of you and bring you a year of Hope, Victory, and Love.

For those of you traveling this New Years, please drive safely.

We love you all,

Dar/Danny/Jamiesue

Merry Christmas Darlene

It was a year ago today I received a very precious gift.

One year ago today God gave me a very special Christmas gift, indeed a miracle. He brought you back to me. Through His skilled messenger a plug was removed from your left lung. As soon as it was removed you began to breath on your own.

Prior to that very special day doctors did not give you much hope to survive let alone recover.

What the doctors did not know at the time was that you are a very “special person”. They did not know what kind of a fighter you are, they did not know about your quiet but yet strong “faith”, they did not know of the challenges you have faced in your short life and how you have triumphed in all of these situations.

On Christmas Day last year you began a journey that continues to this day. You have defied all odds, you have progressed and accomplished things that nobody thought you would do.

You woke up from your coma on my birthday, another miracle and precious gift to your family and me. You moved from Oroville hospital to the Bay Area to begin what has become a long “Journey Back To Life”.

You have surprised all that have met you. You have found your way into each and everyone’s heart that you come into contact with. You have brought joy and happiness to so many people. You have made new friends, some because of similar tragedy. The Stewart’s, the Murphy’s, the Spitzer’s, Latosha, John and Ryne.

You have brought laughter and smiles to doctors, nurses, and techs. You have laughed for so many people and given them a smile when they leave your room.

You continue to amaze the doctors that are taking care of you. I will never forget Dr. Doherty’s first official words to your folks and me. “Darlene is not in a coma”, she is awake and processing all information, “she is not in a vegetative state”.

That was in mid January of this year at Kentfield Hospital, which is where we met and are still very close to Latosha, John and Ryne. That is where I began a friendship with the Stewart’s, Murphy’s and the Spitzers that continue to this day. Carol, Stewart, Peggy, and Tammy became my “texting” buddies. Latosha became your “sister angel”, watching over you in the same room when I was not there. Stewart has been an advocate for you in my absence; Tammy has been your “cell phone angel”, holding a phone to your ear so we could talk long distance. Peggy has been like a rock making sure someone said hi or hello to you every day when I was not around. Kevin, always there to talk to and Dr Mark, your new ENT doc. Dr Mark is the one that prescribed an antibiotic long distance from Merced just prior to us going to Enloe just two weeks ago.

As I sit with you this Christmas Day, as I watch you sleep, as I watch you begin to wake up, I am again receiving a very special gift, indeed another miracle. My gift: another day with my best friend, another day with my wife, such a wonderful gift.

Folks may not be aware of how close we all came to losing a very special angel of God. It finally hit me the other day that had I not taken you to Enloe Med Center the other day for what proved to pneumonia, there stood a very good chance we would have lost you forever. Had you not been in the hospital and we had not caught that you were overdosing on your Baclofen, you could very well have slipped away from us at home and we would not have had the equipment to help you.

I am so thankful that God chose to bring you back to us. I again am convinced that He has something “special” for you to do or maybe just as simple that He wants you to keep doing what you are; “blessing” all whom you come in contact with.

In the last 48 hours God has chosen to bless you and your family in several ways. You passed you initial swallow tests the other day, yesterday you passed your video swallow test just prior to coming back to Enloe Rehab.

Wednesday evening you had your “trach” changed and “capped”, yes I said capped, you are breathing for the first time on your own through your mouth and nose since last December. Your ‘apnea” has not been an issue, Your O2 saturations have been perfect, you have not set off the monitor alarm.

You had the pleasure of having chocolate pudding yesterday along with applesauce. You swallowed perfectly.

On the 22nd your pump was titrated from 96 to 140 mics per 24 hours. Your tone has lessoned tremendously. Although you are still sleepy, when you wake up, usually around noon, you are bright eyed and perky. You are trying so hard to find your voice, you are mouthing words like you used to. As I said, again I have been blessed.

Darlene, I am so proud to be your husband, so proud to have you as my friend. There are no words that can describe how proud of you I am. You are an inspiration to all, a blessing to everyone you come in contact with, a testament to “faith and hope”, and a mirror of what God’s love is.

Well my love, I just wanted you know how special this Christmas is to me and how special you are. We all love you with all that we are and all that we have. We look forward to seeing more miracles; we look forward to your return back home.

So many miracles since last year this day, so many to list, but I have every one engraved in my heart and I will always, always cherish them.

Darlene, I love you and thank you for being the Angel you are. Thank you for being my Christmas gift again this year.

Thank you to all that have supported Dar and I this past year through your prayers, gifts and deeds. We love you all and hope you have and are having a wonderful Christmas.

MERRY CHRISTMAS TO ALL,

Love,

Darlene/Danny

Jamiesue
Maverick, Mr. Awesome
Fosters
Julie

Grinnell’s
Webster’s
Findley’s

"A Christmas Gift For Dar"

Merry Christmas Dr D,

Little update. Dar continues to get well. She is returning to her perky self.

In fact, she passed her swallow tests (applesauce,jello) and is having a video swallow test this morning to see if things have improved since the last Modified Swallow test.

When talk of sending Dar home began, I voiced my concerns enlite of our recent scare. I took it to the top at Blue Cross and I am happy to say Dar is going back to Enloe Rehab for carefull pump titration and observation. Dar will be moving to Rehab sometime today.

Yesterday late in the day I received a call and learned that Dr Val had replaced Dar's trach with a Jackson #4 and cap. In addition she was being assisted with 2 litres of oxygen thru a nasal canula. Her "sats" were holding at 96-97 per cent and was handeling the change well. (they are following very closely with her sleep apnea and vocal cord issues in mind). This all being done with her move to rehab upcoming. .

It would be a very nice Xmas gift to Dar to be able to have some "treats" by mouth.

Both Dar and I wish you and your family a wonderfull Holiday. Merry Christmas Dr D.

Will continue to keep you posted.

Dar/Danny

"Dar appears to be out of danger"

Dar is off the vent, all on her own and doing well, Sheeeewww, that whole ordeal was too close for comfort, docs talking therapy tomorrow and swallow testing before going back to her old trach. Lil miss giggle britches is back. Pump calibration begins all over again with much more caution I'm sure. Do not want to go thru this ever again.

I am taking her wheelchair over in the morning along with a few changes of clothes for her

I'm pooped and feeling really run down. I'm going to bed.

Thank you all for your prayers, talk soon.

Danny

MRI shows nothing of any great subsistance, it is showing some "MINOR" shrinkage possible from the onset of the injury a year ago, but not having a base line previous it is hard to say. The great news is that DR Obrien sees NOTHING to cause need for follow up unless something dramatically changes. Praise God. Thank you for your prayers

"Back from MRI"

Dar has just returned from her MRI, she did great and they got
good pictures. Now we wait, Dr Obrien will call me if there is
something I should know immediatley. Otherwise, tomorrow the
radiologist will give formal intepretation. Dar is alert,waking up
more and more, limber, and comfortable, currently she is breathing
...on her own and only being supported by the vent when needed,
Halleighlua, (spell), I am exhausted, need a fishin fix, Ha Ha
LOL

"Dar is more alert today, thank God"

Sunday, December 20, 2009
0900 Hours


Dar is beginning to come out of what may be a Baclofen overdose.The pump has been all but turned off, we may have an accumulation of medicine in the spinal cord. She is smiling when asked, scrunching her eyes and giving us the bunny rabbit nose. She knows my name and is much more alert. MRI scheduled for 1:30 today. Breathing on her own is still an issue. Praise God for answered prayer!!! :)

Well it is Saturday morning 1145.

Dar continues to be supported by the ventilator. She is showing what the pros call “central” apnea. This is a gap in breaths taken. The vent is kicking in if Dar does not take a breath in 15 seconds.

Dar’s EEG and CT scan both showed nothing of significance. The EEG showed that she was not having any seizure activity during the test.

Her CT scan showed nothing of remarkable or distinctive nature. These are both very good signs.

Dr. O’Brien wrote an order for an MRI that I thought would be today but upon arrival I learned that Dar needs to be able to sustain herself while in the “tube”. Her Baclofen pump is not an issue but the central apnea is.

I spoke to Dr. Filbrandt and Dr Dawson in the bay area and we have collectively come up with a plan. Dr Filbrandt has turned Dar’s pump down as low as it will and should go. Dar is now at 96 mics per 24 hours. Keep in mind she was “detuned” Monday to 415 and still showing signs of total limberness. This is strange in that during all titration’s of the pump previously we saw gradual decreases in the “”tone”. Now, we see the lower we go the less tone she has. A total bewilderment to all of us.

By turning the pump down to 96 we hope to see rewards in her breathing and her cognitive abilities, in other words we are trying to see if she is overdosing on Baclofen. We may also have to go a step or two more. If we do not see the results we are looking for in the next 24 hours we may have to have a Lumbar puncture. This too will give us answers as to possible infections. A CBC and other tests may be warranted.

I also learned from Dr Filbrandt that Baclofen is heavier than spinal fluid. It is also possible that if Dar has been lying flat for too long the Baclofen can collect at the bottom of the spinal cord and accumulate. What this exactly means I am not sure, other than it may lend to too much Baclofen in her system.

Although Dar’s current situation is rare it does happen occasionally and we are told that if indeed we are “overdosing” it is treatable and the affects are not permanent.

The next 24 hours or so are big, so please pray that we will see positive changes in her breathing and her cognitive abilities. It is really nice to see her with no “tone” but not at this price.

Dar’s infections are well under control and she rests very well. The vent is a pain in the tush, but right now is a ‘friend”.

Thank you for your prayers and please continue them. I got the bills paid on time and hope to be able to get some rest soon. We truly appreciate your prayers. Another angel arrived today and I would like to again thank the “stitchers” of Angels Among us. Bless you all.

Till next post, we truly thank all of you.

Love,

Dar/Danny/Jamiesue

December 17, 2009
0854 Hours
Good morning everyone,
It has been a very long few days. Darlene is having some issues that we cannot explain.
Her UTI infection and the phenomena (sp) are well under control. We have developed some rather curious and serious breathing issues. Issues that to date we have no real answers or reasons for.
Dar is being supported by the ventilator, and breathing room air. The problem as we suspect, is related to “central sleep apnea”. Dar will sometimes go as long as 30-35 seconds between breaths, thus causing a fall in her O2 sat levels.
I have asked about doing another sleep study to see if it would shed some light on the issue. A CT scan was done and shows no real abnormalities but does show a little tiny something that Dr Rothfeld cannot explain. He will do another scan in a day or two. At this point he is not too concerned. An EEG was done yesterday of which I have not gotten the results.
It is so very sad and upsetting to see Dar in this situation, just days ago she was home, perky, happy and full of “herself”. It was exciting to be a part of. Now, unfortunately, Dar has slipped backwards and I only get glimpses of her “perkiness. Something is amiss and I pray that we will find out what it is.
Dar needs your prayers, she needs rest, and she needs time to heal from all the poking and prodding she has gone through. Dar needs to heal both physically and mentally. Please pray that Dar will find her way through this apparent fog.
Dar received two more angels the other day and one of them is just above her bed an the
Monitor. Thank you “stitchers”.
Please try to understand, I really try hard to keep everyone updated, but sometimes getting everything done is impossible. I too could use a prayer or two and a big shot of “giddy up and go”, I have so much to do and keep up with and not enough time to do it all. I will continue to do my best.
Please pray for Dar, it has been a long time since we have had something serious happen, please pray for the doctors and nurses as they search for answers.
We love you all,
Dar/Danny/Jamiesue

"Maverick loves a good Western", "Last of the Dogmen"

December 12, 2009
1247 Hours
Dar was moved out of ICU yesterday afternoon to a private room.
Today she continues to get lots of rest and a boatload of antibiotics. We unfortunately find ourselves back in the hospital for reasons I find very upsetting.
I admit I am very new to what “home health care” totally means. At a minimum I would think that if a client has need to call the “agency of record” said agency would take the information from the client and pass it to the prescribing doctor. Then it would make sense to me that the doctor would be in touch with the client with a plan of attack.
Last weekend when this all started I made calls to the “agency” describing our symptoms and thought we would hear back. We did not, in fact we were told that there was no way to contact a doctor in our home area on the weekends and that there is nobody on call. Finally on Monday we got a prescription for Dar’s UTI, nothing was said nor was anything acknowledged about her breathing issues or what Jamie and I were suctioning out of her lungs. We allowed the new antibiotics a few days to kick in and in fact started to see some change in Dar. This may have cost us some valuable time
On Thursday I returned to work and Jamie returned from her bout with the cold and we both thought we were back on track. Little did we know that things were going to change on Thursday when I got home? I arrived home at my normal time and Jamie said that Dar had been “good” all day. Shortly after my arrival Dar began to “desat” yet again. This time when I tried to suction her I almost could not get through the “junk”. When I did and got it out I told Jamie “this is it, we’re going to Enloe”. I made the call and off we went.
Dar was admitted to the ICU mainly as a precaution based on her blood gasses results. It was the thought of Dr Val that part of her issues might be a result of too much Baclofen being adjusted on Tuesday. A call was placed to Dr Park and yesterday and he backed her back down to where she was on Tuesday. I spoke with him yesterday and he believes that the adjustment was not the issue. He plans on coming in today and tomorrow and slowly turning her back up.
I had a lengthy discussion with Dr Val about my concerns regarding response and lack of response from our “providers” at home. We concluded with the assurance that if we changed, things would be different. Dr Val agreed to take on the role of Pulmonary Specialist along with Dr Verma, a new Primary Care Physician would come onboard, a request for a consult and evaluation by Dr Sing, Neurologist, (one I have been wanting) would be requested for while Dar is here, and a new Home Health Care Agency, specifically Enloe Home Health. Lastly, we will continue with our “pain management team”, Dr’s Park and Filbrandt and the Enloe Rehab staff.
So, you can see we now have a new “Dream Team” for Dar. One specific point that Dr Val made was that when I called with a question or concern that I would receive a return call. I found this new “team” and attitude very comforting. I pray that all this will play out as stated.
I learned the other day that it was the “opinion” of some at our former “home health agency” that I was “too demanding”. Well if making sure Dar gets the best care and correct care that she needs and is entitled to, is demanding than, I guess I am demanding, very demanding. You can bet your last dollar I will continue to be too!!!!!!!!!!!!
Needless to say, I severed relationships with the home health agency and doctor’s back home and I am looking forward to our new “Dream Team”.
Dr Park just stopped by and we both agree that we will hold off the titration of Dar’s pump till tomorrow. Dar is very limber today and has been since my arrival. We are going to wait and see if by tomorrow she might be a little more alert and not so “snowed”. I would think that with all the antibiotics she is receiving that there is an influence to her awareness and alertness through out the day.
All in al I feel we are in a good place. I feel Dar is on the mend, I think everything is now under control and we just need a few days of rest and relaxation for Dar to return to her happy perky self.
I am off to Costco on my way home to pick up supplies for Dar and a few groceries. We hope you have a great weekend and enjoy your particular weather. It is cloudy and rainy here today and should continue for the next few days. We certainly need it and it is a welcome change.
Love to all, and to our extended family we wish you much joy and continued growth with each of your special situations.
Talk soon,
Love ya all,
Dar/Danny/Jamiesue

"Really short"

Really short before I leave to be with Dar.

Last evening I took Dar to the Enloe Med Center. I just was not comfortable with the things I was seeing and the way she was acting.

Due to the fact that she has the Baclofen Pump and we must concern ourselves with infection to it, and that her pain management doctors all work in conjunction with Enloe Med Center, I deemed it best to go there.

Dar was admitted and then moved to the ICU unit, after talking with her Pulminary doctor my suspicions were comfirmed that Dar has a "not severe" case of puenomia. She was admitted to the ICU as a precaution.

Of more concern to me, (as if I am not concerned), "Duh", is what is going on with the trach and the foul odors that had begun yeaterday and the day before. I am assured now that they are all related and that her trach will be changed out and replaced before she comes home.

I will keep you informed as I get new information,

Love to all and please keep your prayers coming in the next few days.

Love,
Dar/Danny/Jamiesue

"Dar is doing better"

Darlene rested very well last night and even continues at this writing. It seem that after her pump is titrated it takes her a day or to get adjusted to the new dosage.

Yesterday Dar and I traveled to Enloe Rehab and Dr Filbrandt adjusted her pump to 500 mics per 24 hours. This was an increase of 35 mics. Dar was at 465, now she is at 500.

The standard increase I am told is 10 per cent of the current dosage. I would imagine it should not take Dar too very long to adjust to the new setting.

Last night she rested so well that even I was able to get a couple of hours sleep. Her fever has been down all day today and I hope we will be seeing more positive progress as we continue the remaining dosage of Leviquin.

Dar’s “tone” has greatly decreased in the short time since the titration yesterday. Her arms and legs are much less stiff and her hands and fingers are much easier to put her splints on.

It seems strange that if a medication is introduced over a 24 hour continuous period, one would expect positive results over that same 24 hour period. I am learning that is not always the case. There are other factors that come into play, how Dar feels overall, how much pain she might be in, her mood, all these things factor into her “tone” and or amount of it. I will be glad when we can have noticeable tone reduction and Dar has the ability to mentally ask of herself to move parts of her body. We truly believe that she has the mental capability but as to date has not been able to follow through said request with the “purposeful” conclusion. Everyday I wait and hope that she will move a finger, kick a foot, raise her arm, give me a thumbs up when I ask her. What a joyous day that will be.

Tomorrow I return to work and Jamiesue will resume caring for “momma”, Margie will be in about 10:00 and she and Jamie will begin to set up some scheduling so Dar is covered and Jamie can have time during the day to take care of some of her responsibilities that unfortunately can’t be done after I get home from work.

Margie’s daughter Carissa will be in around 9:30 or so this evening to “companion sit” with Dar while I get some much needed sleep. In the event that Dar has an “issue” I will be close by to respond.

It will be so nice and such a relief to have additional help attending to Dar. You cannot imagine the weight lifted from my shoulders yesterday as Margie and Carissa and I spoke and I began to realize that things are going to get better and hopefully a little easier.

Margie came by this morning and learned how we give meds and food and she made a very good suggestion. Her mom is receiving help form Enloe Home Health and has recently received the same Baclofen pump Dar did. When Margie’s mom came home she has a team working for and with the same doctors that Dar has at Enloe Rehab.

It only makes sense that Dar should be doing the same thing. Then we have the advantage of doctors and therapists all working together with a common goal, Dar’s improvement.

Well, I will talk to you all again soon, I HOPE, please continue your prayers and we thank you all so very much for your support. Again a big thank you to “Angels Among Us” for the beautiful angels. They protect Dar every day.

Love to all,

Dar/Danny/Jamiesue

"Angels Among us"

Today Darlene received 8 of the most beautiful hand stiched angels you would want to see. these gifts of love aand protection came from all over the United States.

I did a little research and learned that an individual most be submitted by a friend or relative to this small but very special group of "stitchers".

I think that this is one of the most precious things that Dar has received. I hung each of the Angels above Dar's bed so that when she gazes to the heavens she will know that she is being protected by God's very special Angels.

Although she is not able to see them Dar is keenly aware of their presence. We talked about each of the angels as I hung them with care and thanks.

Again God has been good to us. I am moved more and more each day as I see God's hand in this very special young lady's life.

In addition to the angels Dar and I recived another blessing. A very dear friend and her daughter will be coming aboard very soon to help with Dar's care during the day and overnites so that I will be able to get some rest.

Margie and her daughter Carrisa will be joining Jamiesue and I in the next few days attending to Dar. This will be a huge lifting of a burden that has begun to get very heavy.

Carrisa will provide me with overnite care for Dar and I will be available in the event of special need. Margie and Jamiesue will work together for a bit and will find new ways to make Dar's days more comfortable.

I will post again soon and bring you more information about todays visit to the doctor at Enloe Rehab and Dar's condition in regard to her infections and breathing issues. I will say this the antibiotics are beginning to work and Dar is a bit better than she was. I look forward to the next few days as the medication does it work and Dar returns to normal.

To the Angels Among Us I say thank you and we love the Angels. They fly above Darlene each and every moment of the day and I will be forever in your debt. Bless each and every one of the "stitchers".

With all of our love,

Dar/Danny/Jamiesue

"Something Short"

When I said I would be more diligent about postings I did not think Jamiesue would get sick and then Dar would follow.

Well, that is what has happened in the Mardilla household. I had to keep Jamiesue away as of Saturday morning, Dar came down with a UTI infection again compounded with some respitory issues.

As you well may imagine since we have no other help,the duties have fallen on me to take care of Dar round the clock.

Dar is requiring alot of suctioning and I am keeping a close watch on her O2 sats. It has been very very hectic and without sleep for me since Saturday at noon. Today we finally got some kick butt antibiotics and hopefully we will see positive results by tomorrow evening.

We are off to Enloe Rehab tomorrow afternoon to have Dar's pump looked at as I am concerned she is not getting enough Baclofen. Dar is having spastic movements in her feet, ankles and legs. I have spoken with Dr Dawson in the bay and he agrees we need to have averything looked at, especially since any infection gone untreated too long can get into the pump and then we have serious problems. To date and time Dar is not spiking a high fever. If we reach 101.3 we are off to the hospital.

I hope that the antibiotic will also deal with her breathing issues and get rid of what ever is going on. There is so much to tell you of what has been going on over the last week but unfortunatley it will have to wait until the crisis is over.

If I were to ask for a specific prayer it would be this. Pray that Dar and I will receive some much needed assistance and help in our home. We are in the process of paperwork for In Home Health Support but it all takes time. In the meantime if Jamie is sick I have to take time from work to attend Dar. Thank God for accumulated sick leave and vaction.

Please forgive the lapse in posts and if anyone has any suggestions please feel free to leave a comment or send an email.

Dr Mark, thank you so much for your help, Dar started Leviquinn this afternoon.

As I said please forgive the lapse,

Love to all,
Dar/Danny/Jamiesue

"Something Short"

When I said I would be more diligent about postings I did not think Jamiesue would get sick and then Dar would follow.

Well, that is what has happened in the Mardilla household. I had to keep Jamiesue away as of Saturday morning, Dar came down with a UTI infection again compounded with some respitory issues.

As you well may imagine since we have no other help,the duties have fallen on me to take care of Dar round the clock.

Dar is requiring alot of suctioning and I am keeping a close watch on her O2 sats. It has been very very hectic and without sleep for me since Saturday at noon. Today we finally got some kick butt antibiotics and hopefully we will see positive results by tomorrow evening.

We are off to Enloe Rehab tomorrow afternoon to have Dar's pump looked at as I am concerned she is not getting enough Baclofen. Dar is having spastic movements in her feet, ankles and legs. I have spoken with Dr Dawson in the bay and he agrees we need to have averything looked at, especially since any infection gone untreated too long can get into the pump and then we have serious problems. To date and time Dar is not spiking a high fever. If we reach 101.3 we are off to the hospital.

I hope that the antibiotic will also deal with her breathing issues and get rid of what ever is going on. There is so much to tell you of what has been going on over the last week but unfortunatley it will have to wait until the crisis is over.

If I were to ask for a specific prayer it would be this. Pray that Dar and I will receive some much needed assistance and help in our home. We are in the process of paperwork for In Home Health Support but it all takes time. In the meantime if Jamie is sick I have to take time from work to attend Dar. Thank God for accumulated sick leave and vaction.

Please forgive the lapse in posts and if anyone has any suggestions please feel free to leave a comment or send an email.

Dr Mark, thank you so much for your help, Dar started Leviquinn this afternoon.

As I said please forgive the lapse,

Love to all,
Dar/Danny/Jamiesue

"Opps My Bad"

November 29,2009
1541 Hours

Nurse Julie was over today, part of our planned weekly visits. Dar is in good health, and continues her good spirits.

Julie plans on showing me how to replace Dar's "G Tube" in the event we had a problem or accidently pulled her's out. I learned that part of the Foley catheter can be used temporarily in most cases. This wil be valuable information to have.

Dar still continues to show some signs of Thrush, a common problem in infants. We have been treating it twice daily and are going to increase it to 4 times per day.

I really messed up this morning, Julie was supposed to take a blood draw for Dr. Garretson and dum dum me forgot that Dar was supposed to "fast" for 12 hours prior. I can't believe I forgot. I have only been reminding Jamie for days, and then I forget. My bad!!!

Julie will stop by in the morning around 10:00 and try again. I won't forget this time.

Kerry, from Carpets Galore stopped by around 5:00 yesterday and we pulled a section of the carpet around Dar's bed to find what we were hoping for. The most beautiful origional hardwood floor, I know now that it goes throughout the whole house. I cleaned the area this morning and tomorrow in the am one of Kerry's staff will be out to but the metal carpet edge down. I was really pleased to see this beautiful floor.

Apria medical will be out also to replace Dar's matteress with a 12 inch "low flow" mattress and compressor. This will be a good switch as the mattress we have now is not tall enough to allow the standard heighth of the bed to go high enough for Jamie and I to comfortably attend Dar.
We will also be taking a trip to town to have Dar's chest x-ray.

Jamie is spending the day in Butte Meadows hunting for a Christmas tree, I hope she has a good time.

Dar's sister Diane called from Oregon using her new Skype program and had a good time with Dar. In fact Maverick had fun too, he got to see Dar's cat Lizzy on the computer and all but tried to climb into the silly screen to get to Lizzy, was quite funny.

Well I hope you all had a great weekend with friends and family over the holiday

Take care and we will talk again soon,

Love to all,

Dar/Danny/Jamiesue/Mav

"A Taste of Our New Life"

11-28,2009
0400 Hours

Good morning to everyone,

I promised some days ago that I would try to be more diligent in reporting Dar’s progress. Little did I know that when I made that promise just how hectic things could be around here?

Since Dar’s return home Jamiesue and I have been so busy that we hardly have time to catch a breath. We have had equipment issues, beds that don’t go high enough so I have to build pedestals for the legs, a foley catheter that decides to leak so we have to have the Home Health Nurse come out and place a new one, only to return two days later cuz it appears that Dar was having “bladder spasms”. “That scared the crap out of me”.

Jamie and I have been arranging Dar’s suite to best accommodate all her new equipment. Putting this here and putting that over there, we have probably changed the front room around 16 times before we finally got it close to right. I think Jamiesue probably thinks her dad is just a little “nuts”.

Dar’s lift is in place, ready to be used when needed, in fact we have used it several times already and have found that with a little help from our friend Kerry at Carpets Galore in Oroville it will work even better. Kerry is coming over later this afternoon and he and I are going to take a section of carpet directly around Dar’s bed out and expose the natural wood floors of this house that was built in 1959, I hope the floor is in as good of shape as the two bedrooms. If so maybe just a little polishing and we will be good to go. If not Kerry suggested a section of floating laminate.

The tilt table, generously donated for use by Ryne Spitzer’s mom and dad, raised to a 30-inch height by Phil Atchison is placed and ready for use. The new 4x7 mat table, designed by me to go over the antique coffee table was built by Better Builders Inc and upholstered by Ernie’s Custom Upholstery has become Maverick’s new bed and “crows nest” for watching out the front window was delivered on Thanksgiving Day.

A typical day, if there is such a thing for me begins around 1:00 am when I arise to the first of two alarm clocks. At 1:00 I get up and reposition Dar and check her splints and make sure she is comfortable. At 4:00 am when the other alarm goes off I arise and yet again reposition Dar and check to see that she is ok. Normally 4:00 am is my usual time to get up, although for the last 11 months it seems that it can vary from 2:30 to 4:00. At 5:00 am I give Dar her first bit of nourishment, she is fed 5 times a day at 4-hour intervals. At 6:30 Jamie arrives and it is off to work for me.

Sounds fairly simple, doesn’t it. Boy, were we in for a surprise. All it takes is just one little hick-up; one little unexpected surprise and we are running around like chickens with our heads off. Jamie is responsible for many of the daily things we would normally do without a thought. Teeth brushing, hair combing, getting dressed, using the bathroom, showering and lastly getting Dar in her chair so she too can enjoy the day.

I have to say that my hat goes off to Jamiesue; she has and is the “rock” around this house. She has stepped up and taken the “role” of “caregiver” for step-mom very seriously and quite frankly is amazing.

Thanksgiving Day I have to say my daughter saw a side of her dad that to be honest sort of hit home for me. Jamie, I now know has always believed that her dad could do just about “anything”, well, I have to admit she saw her dad totally loose it and get absolutely frazzeled over something as simple as changing Dar’s britches. Yep you read correctly, changing britches.

I remember Jamie as an infant, changes britches was no big deal, a cakewalk. Well the other day changing Dar was like an elephant in a clothes closet. I could not get a handle on the process to save my life, I new the basics, I knew how it was supposed to work, but for the life of me I could not get it. It was like I had tree stumps for hands, I could not get that silly thing on, or at the least in the right place. I ended up calling Jamie in my frustration. Steadfast to a tee, Jamie got me calmed down, walked me through it, and I still could not get it right. You have to remember, here I am with Dar in a totally uncomfortable position, worried about all kinds of things and I can’t get this silly thing on right. Jamie dropped what she was doing and came over and pulled her dad out of the fire and gave me another lesson in the art of “britches”.

I guess, up till the other day, I never thought my daughter looked at me as “my dad can do anything”, made me stop and think a whole lot.

Back to our story;

Jamie works till I get home about 3:45, Monday through Friday, Nights and weekends belong to me.

The changes we have seen in Dar make all the “hiccups”, all the “monkey wrenches”, all the “opps, I was not expecting that” worth it. Dar is so happy to be home, back in her own house, those two things alone have made a world of difference in her attitude and recovery.

We have been able to find new and different ways to communicate, I am learning her sleeping habits, her awake times, her signals that she uses to communicate with us. It is a never ending, always-different journey. Never routine, never like the day before and always and I do mean always, a joy to be around.

We traveled to the doctors the other day in the new van and Dar had a great time being out. Her doctor ordered up a chest x-ray and a blood draw. We will get the x-ray this next week and Sunday Julie from Home Health will do the blood draw.

Occupational Therapy was out yesterday and worked with Dar for about an hour. Jamie and I learned some new things we can do to help Dar with her “tone’ issues in her arms. Ms. Merlin was very nice and worked with quite conversation to Darlene.

Speech Therapy comes out today just before Kerry from Carpets Galore gets here to remove the carpet. It will be exciting to see what this new therapist has to offer to the game plan.

I may try to work with Dar on the mat table at some point today and try out the new foam wedges that we got from Square Deal Mattress Factory in Chico. I remembered some of the pads and wedges that were used for Dar at Caremeridian and had them duplicated for her to use in her gym.

We did get a bit of great news the other day. I received a letter from the Calif Dept of Human Services that stated that Dar’s Medical benefits were being reinstated. You may remember that she lost those benefits when she came home because “my income and resources” were too high, and because she and I are married, she would not qualify for continuing benefits unless she stayed out of the home. Well you know how that went over in this house.

It was these Medical Benefits (Medical is required) that would have enabled us to apply for In Home Support Services that would have and ‘do” provide additional help in our home based on the needs of the “client”, in fact this program would pay for Jamie to take care of mom, it would help by paying additional assistance at night while and so I can get some rest.

Well, one of the things we are doing and applying for is a wavier that would separate Dar’s income from mine, problem is that this application could take several months to clear and there is no guarantee. In the meantime I got this letter stating that Dar’s benefits, (not payment), were being reinstated until further notice to the contrary from the State or the County. By reason of a class action law suit and Dar’s benefits were taken away Dar is now considered a “beneficiary” of that lawsuit.

What this allows us to do and we have started, is to apply for In Home Support Services” for Dar. This process too can take several weeks but the doctor can backdate it to the date of signature.

This additional help is so important to us. Right now, because of all this “crap” as I call it, Jamiesue and I are the only ones taking care of Dar. We are both tired but realize this is the choice we made for Dar to be back in her home with loved ones and her own things around her.

Even a simple thing like a “companion sitter” during the night for a few hours while I sleep could be covered by this program and such a big help to our family.

Well, now you have a little taste of what our day is like.

God has been so good to us during this ordeal, so many blessings, so many things to be thankful for, so many people helping in whatever way they can, new relationships made, new friendships. As I write I feel as if there is really nothing I have a right to complain about. I have so many blessing to be thankful for and so many good thoughts and miracles to remember.

That said, to every one of you, Darlene and I thank you from the bottom of our hearts for what you have done for her and even myself. We look forward to seeing you at the house, she wants to have visitors, she needs to see and hear her friends, she needs to make that connection with all of you and I guarantee you it will be a blessing to you. You need not fear, you need not be worried, Darlene is so acutely aware of all that goes on around her and can participate in practically everything. She is beautiful, aware, and still Darlene, come see her soon………………she would appreciate it, and love it

As we say on Facebook…………….TTFN,,,,,,,,,,,Ta Ta For Now

We love you all,

Dar/Danny/Jamiesue/Mav

Darlene's new equipment,


New mat table, delivered today, built by Better Builders Inc, upholstered by Ernie's Custom Upholstery, Oroville Calif.

Arjo Trixie Lift, picked up by Linda and Les Rominger in Phoenix Arizona and brought home last weekend.

New tilt table, donated for use by Dr. Mark and Tammy Spitzer and son Ryne, height raised to 30 inches by Phil Atchison, thank you Phil and Christina.



The list is way too long to express how thankful we are to have Dar home. The joy she shows daily is infectious, hears my alarms at 1am and 4am, the floors creak and greets me with a smile cuz she knows I am coming to attend her. Maverick is sooooo attentive, sleeps with Dar every chance he gets. We are watching/listening to the Macy's parade this morning. . Happy Thanksgiving everyone.We love you all,

Will post more in the morning when Jamiesue arrives and I can spend more time on the computer.

Love to all,

Darlene/Danny/Jamiesue/Maverick

"Back from Merced"

My trip to Meced was great!!!!, van is beautiful, tilt table is still in wrapping/packing paper. A big thank you to my insurance agent Micheal Reilley, Mercury Insurance Chico, for going with and driving back again. Luv ya bro, Tammy, Mark thank you again for the table it is going to help so much,it was so good to see you both. Ryne looks great, your home is beautifull. Can't wait to take the new van and bring Dar to see you all. David Hooker, Fresno, thank you for the van, Randy Smart (relation), thank you for negotiating the price. Most of all thank you Lord.

Will post again later, my night shift with Dar has started, I'm pooped but doing well.

Love ya
Dar/Danny/Jamiesue/Mav

Ps.
Jamiesue as always, I love you, thank you for covering my Saturday, your the bomb!!!!

Headed to Merced tomorrow to pick up Dar's tilt table annnnnd her new wheelchair van. God has blesed us yet again, a beautiful 2001 Ford E150 Chateau ADA van, Dar will be much safer and Jamiesue will be able to transport to appointments and I will be saving my back not lifting Dar in and out of the Duramax.

Will keep you posted,

Love,

Dar/Danny/Jamiesue/Mav

"Not jusrt coming home......Dar is home!!!!!""

Nov 19,2009

This post was written this morning but just posted, as you can see Maverick has take his "sentry" position. Way to go Maverick!!!! Mom is home yeeehaw.

Darlene is coming home this afternoon, what a Thanksgiving blessing this is. Have to keep this short this morning, but wanted to also tell you this.

We just,last evening, have accquired a tilt table for Darlene, courtesy of Ryne's parents Dr. Mark and Tammy Spitzer. Now we have a full gym, mat and tilt tables. Next step is to figure out when I can get to their nome town of Merced while I am on Thanksgiving break from school. Boy will Dar's therapists be impressed. Thank you so very much Mark and Tammy. Love to all of you, hope to see you next week sometime, maybe Friday?????

Also, a message to Christy and Dennis, we would love to have you come see us soon and maybe spend some time with the "little whipper" sometimes know as "snicker puss".

I will be home tomorrow and probably Monday as Dar has her first regular doctors appointment on Monday afternoon. Her new primary physian is the one that found the blockage in Dar's ling and removed it allowing her to breatrh on her own way back in December of "08". Blessed once again to have Dr Garretson on the team, he is also a Pulmanry Specialist, again another blessing and miracle.

Love to all and I will write again very soon.

Love, Dar/Danny/Jamiesue/Mav

Yes, we are coming home tomorrow"

November 18th 2009

Dar continues to do well medically, her pump is now up to 450mics/24 hours.

We learned yestrerday that we might be headed home tomorrow afternoon. I believe Dar is ready and wanting to get back to her familiar suroundings.

We are having a new "fully" electric bed deliverd today. The semi-electric was just not cutting it. It would not raise high enough for Jamie and myself without hurting our backs. We too have to remain safe and healthy.

Dar's new wheelchair will be deliverd on Friday from the bay area. Her chair is built specifically to Dar's needs and size. We have been using a loner from the manufacture. This new chair will be a big asset to Dar's comfort.

Yesterday I stopped by our local medical supply house looking at inventory they have and asked about a "pulse-ox" meter. Shelia had several types but told me that she had something special I might be interestd in. She had some used, very high tech meters that would not only accomodate Dar's basic need for the meter, but would also gather data that we could download to our computer giving us information about her heart rate and oxygen levels at night while she sleeps. This could be invaluable information with regard to her sleep apnea. These machines are very expensive when purchased new and I am thankful to Shiela that we were able to purchase this unit for less than the price of a new finger monitor. Yes, another blessing and miracle.It may be a year or two old butt works very well and parts are readily available.

Well I will post again soon, must get off to work and prepare to have Dar's new bed delivered about 10:00 am this morning.

Dar's new Trixie lift will be here mid-week next, and we are very much looking forward to this piece of equipment.

Please keep us in your thought and prayers. To all of our frioends and loved ones, we love ya all.

Dar/Danny/Jamiesue/Maverick

Ps, post update.

We just this evening have accquired a tilt table for Darlene, courtesy of Ryne's parents Mark and Tammy Spitzer. Now we have a full gym, mat and tilt tables. Boy wil Dar's therapists be impressed. Thank you so very much Mark and Tammy. Love to all of you

"Thanksgiving is coming, We have been blessed"

Sunday, November 15, 2009
0448 AM

Good morning everyone. As I promised, I am trying to be a little more regular with progress reports on Dar.

Yesterday Dar was in a fantastic mood. Her mom, dad, sister and brother in law arrived just prior to my arrival at the hospital. Diane and Roger had stopped by briefly on Friday to see Dar for a moment before retiring to their motel.

Dar’s attendants had dressed her and Jesse was getting Dar in her chair when we all arrived.

We strolled out to the front lobby and everyone visited with Dar. Stories were shared and laughter abounded as Dar recounted in her mind many stories of childhood, marriage to a goof ball like me and thoughts of going home to her own house and surroundings.

We took a tour of the facility and ended up in the dining hall. Roger found a piano and began a concert in Dar’s honor. The room is very large and without acoustics, Roger’s attempts to play quietly failed and his sonnets could be heard throughout the facility. Dar sat in her chair in quiet contemplation of the “tunes” Roger played. With a perfect grin on her face, a gleam in her eyes it was clear she very much enjoyed Roger’s recital.

Dar’s dad found an area of the dining room devoted to jig saw puzzles so we lost him for a while during the concert.

Dar had been in her chair since about 9:30 and about 12:15 she began to show signs of being uncomfortable, so off to bed we went. I put her back in bed and removed her hand splints for an hour and all was good in her life again.

Dar’s family went to have a bite to eat and returned just as Dr. Park arrived to check in on Dar.

He asked me if Dar had received her Botox injections in her arms on Friday. I told him that Jamiesue had texted me about 3:30 Friday and informed me that she had indeed received them. When I arrived on Friday Jamiesue also told me that there is discussion about Botox for her legs, Dr Park added that there may also be injections for the feet and toes before Dar comes home. It will be 10-14 days before we see marked improvement in the arms. When we do, the injections should last about 4 months.

Dr Park calibrated Dar’s pump to 390mics/24 hours, she had been at 370 on Friday morning.

It is comforting to me as a loved one and caregiver to see Dar in so much less pain. The pump has been such a great asset to Dar’s recovery. Although it is not a perfect fix, nor is it a fix that reduces/relieves the “tone” issues 100% of the time, it is providing Dar a level of comfort that allows her to focus on healing in other areas 100% of the time.

I knew that we might not see the “robust” rewards to her upper extremities as we do to her lower, it is very obvious that Dar is in much less pain and discomfort in her arms, neck, hands and fingers. With the Botox injections to her arms I pray that Dar will see additional relief, especially in her hands and little fingers. They are better but there is still much room for improvement.

During conversation with Dr Filbrandt on Wednesday, he talked about possible weaning of the trach. Botox was also lightly discussed for muscle relief in the area of her vocal cords. This might allow Dar to use her vocal cords better thusly allowing her to speak better and more often. A very short test of Dar’s breathing will show if there has been any improvement to her “vocal cord spastisity”. By putting a O2 saturation monitor on Dar’s finger and simply capping her trach will show if there has been improvement. If prior to “capping” Dar’s “sats” are in the upper 90’s and upon “capping” and Dar having to breath with her mouth and nose, if her oxygen saturation level falls or starts to drop, we will know that her vocal cords are not opening as they should to allow her enough air to her lungs. If this were to happen as it has in the past, we would know that “trach removal” would not be a good idea. I pray there has been improvement.

Another positive note is this. We have successfully got Dar on a feeding schedule and med schedule that has all meds be given only once a day. Dar will receive her meds at 10:00 in the morning. As I told you yesterday we have eliminated 3 of her meds that were given at various times of the day. This is an exciting accomplishment.

I shared with you yesterday of my dear friends Linda and Les Rominger. Linda called yesterday about 10:00 in the morning to let me know that they had made it to Phoenix and had loaded the Trixie lift and were headed home, back to Vegas. Needless to say I was a little shocked when I heard this news, only because I though that they would call to ask questions and maybe ask for a lesson in how it worked. When I asked if the lift was all that I had hoped for, Linda said that it was “perfect” and in “pristine” condition. Laura, the seller was charging the battery pack and Les was able to work the lift enough to know that it was in perfect working order.

We will pick up the lift during the Thanksgiving holidays as Linda and Les will be returning home to Bangor to be with family for the holidays.

Again to Ms. Laura, I/we so appreciate this lift and thank you so much that we were able to purchase this from you. May God bless you and your family this holiday season. Darlene, Jamiesue and I wish you much joy and peace this holiday season.

It is now 5:45am, time to get showered and ready to return to see Dar, I hope that Dar and her family had a good continuing visit yesterday after I returned home. I could tell that they were very happy to see Dar in great spirits and happy to be closer to home and family. In the time that we were all together yesterday, Dar was “spot on” and it was nice for me to see the joy and happiness in her family.

Dar and I thank you all again for your prayers and support, as we get closer to the holidays, it is our prayer to all of you that you have a wonderful and joyous time with friends and family. For those with loved ones serving in our Armed Forces, we thank you and ask for special blessings for you and your family.

For those that might find themselves in situations similar to that of the Murphy’s, Spitzer’s, Reimer’s, the Farris’s family, the Stewart’s and us, we wish and pray for all of you a very special blessing from God. We love you all,

Dar/Danny/Jamiesue

"Yes, I know it has been awhile"

November 13, 2009

I must apologize to you, Dar’s faithful readers.

Since the passing of my father a mere 5 hours before I left to bring Dar home from the bay area, getting Dar settled at home for only a day and a half before heading to Enloe Rehab, for what has proved to be a very good thing, dealing with dad’s estate, working and visiting Dar on a daily basis, life at the Mardilla house is anything but quiet. In fact it is more chaotic, hurry-scurry, and totally without a moment to catch my breath.

Laundry to do, bills to pay, sleep when I get a moment, house to keep in order, dawg that wants attention, yeehaw, and I thought I did not like roller coasters, guess what, I’m on one.

Am I complaining, nope, not at all. This is my life; this is what I am supposed to be doing. God has been gracious to me too. He has given me the strength to persevere, to go and go like the energizer bunny, he has brought my daughter Jamiesue back into my life and given her a compassion and drive that I can only describe as “heaven sent”.

This young lady has spent everyday at Enloe with Dar since the day she was admitted. Jamiesue spends 8/9 hours a day, Monday through Friday learning and taking care of Dar. She is totally prepared and capable of taking care of Dar during the day when step-mom comes home. She too has been blessed by this ordeal and everyday I have the joy of seeing God work in her life. She has become quiet the young lady and I am so proud of her.

As I began, I so apologize for the gap in posts; I will do my best to be more diligent in keeping you up to date with Dar’s progress.

Okay, here’s what’s been happening since I last posted

As of yesterday, Dar’s pump has been turned up to 370mics/24 hours. She has been weaned off 3 of her medications. Dar is no longer taking the Sinamet, Dantrium and the Provigil. The Dantrium is used to reduce tone and spastisity and the other two were for alertness during the day. What this means now is that when Dar comes home she will only be taking her Keppra, for seizures, her Singular for allergies and her Zoloft. These will be the only pharmacy meds; all other meds will be over the counter. This will be really sweet.

Bolace feedings were started late last week. Bolace feedings replace the use of the “pump” and the need for Dar to have a continuous feeding for 20 hours a day. Now, we “pop” open a can of her supper 5 times a day and basically pour her “supper or breakfast” into her stomach through her “G-Tube”. When Dar comes home we hope to have our feeding and med schedule to a point where Dar will be ready for “lights out” by 10::00 pm. This new way of giving nourishment will big a big help.

Therapies have really taken off in the last few days. Dar is really working hard in each of them. She is spending a lot of time in her chair and finally enjoying it. We ran a spell recently that for some unknown reason Dar did not like her chair one little bit. We really have not figured this one out. I am just glad to see her back in it and having fun.

We have been, once again blessed in a special way.

While Jamiesue has been with Dar these many days, she has been training with a Hoyer lift. The lift is used to get Dar in and out of bed, to and from her wheelchair or shower chair. We have the same lift at home as does the hospital and Jamiesue does not like it at all. She does not feel safe, nor does she feel Dar is safe. Jamiesue asked my to please try to find the same lift we were both trained on at CareMeridian. Needless to say dad was on a mission to find an Arjo Trixie Lift. The hunt began and although I found a couple and only a couple they were all on the east coast and just recently sold. These lifts are very expensive and usually very hard to find, new or used. Insurance does not normally cover the cost of used equipment if it is not sold by a contract vendor. I had already made up my mind that I was going to find one and would pay out of pocket for it. Dar’s and Jamie’s safety are the most important thing.

To make a long story a little shorter, I found the lift we were/are supposed to have. It is the same as what we trained on, it is about a year and a half old, has battery charger, two batteries, manuals and even the same sling as what Dar was using at CareMeridian.

Unfortunately, we ran into a little problem, but once again God provide the answer. The lift is in Phoenix Arizona and the seller does not want to go through the hassle of shipping. “Come and get it and bring cash”, that’s what I was told. Okay, now what. I then remembered that I have two very good friends from Bangor that are working in the Vegas area, Linda and Les Rominger. Many years ago, I was fortunate enough to be part of the recovery and healing of their son Todd. Todd was the victim of an accidental shooting.
I was fortunate to be able to be part of many fundraisers with my DJ services from years ago. The Rominger family and I have been blessed to still have a very close relationship that they know I will be there for them at any time. Just say when and I am there.

I called Linda and asked if they might be able to help. Without hesitation Linda said that they would drive to Phoenix, some 5 hours one way, check out the lift, call me and go through the mechanics of the lift and if it measured up………..make the purchase and bring it to us when they come home for Thanksgiving.

Right now it is 0446 in the morning, Saturday, and Linda and Les are on their way to Phoenix. Dar’s Dream Team just grew by three, Linda and Les and Laura from Phoenix Arizona. Thank you all, you have made Dar’s life much safer and easier.

There is still more to tell you about. This should get your taste buds going and I am going to leave you with these great bits of info for this morning. I need to get a few things done before heading to Chico for the day.

Dar’s mom and dad, Diane and Roger are here for the weekend to see Dar.

When I return later today or tomorrow I will share with you some of the plans and thoughts that doctor has, Dar’s recent and upcoming Botox injections, and other good stuff. Stay tuned everyone and again I am so sorry for the long delay. I feel like a puppy dog chasing his tail.

God has been gracious to the Mardilla family. As we approach Thanksgiving, from Darlene, myself, Maverick and Jamiesue, we wish you all joy, happiness, love and peace.

More to come in a few hours’ folks, God bless and have a wonderful day. Linda, Les, drive safe and we love ya.

Dar/Danny

"Pump at 290mics/24 Hours as of Tonight

November 5, 2009

0430 Hours

Darlene continues to do well. It appears that we have had our stay extended another week. Not confirmed to me, but that is the rumor.

Pump titration is up to 280mics/24 hours. We started seeing noticeable results in Dar’s upper and lower arms and some small results in her fingers at 270mics. That was the day before yesterday.

Sinamet, used as a neuro stimulant has been stopped. It was the opinion of Dr Park that it might be having some affects that caused Dar to remain sleepy and too laid back. The life span of the med is about 3 hours, getting the med at 7 and 12, Dar was not getting bright eyed and bushy tailed till about 3-3:30. We notice an immediate change after reducing the med by half. Dar is currently not taking the med and is more alert and participatory in her therapies.

On Tuesday Dar stood in the “Standing Frame”, (which she hated at Kentfield) for 12 minutes. I am told she tolerated it very well.

Jamiesue has been at “momma’s side every day learning all kinds of new things that will help her as she takes care of Dar during the day when she returns home. I am so proud of this young lady and her commitment to Dar. Having gone through her own struggles in the past, Jamiesue has become not only a wonderful, thoughtful person she too is a testament that miracles happen everyday and God is alive and well in her life.

Last night at 9:00 pm, they started Dar on a new feeding schedule and technique, ikt is called “bolas feeding”. If all goes well, Dar will receive her food directly through the “G Tube” at specific times of the day. If she handles the transition well she will get food about 5 times a day thus eliminating the need for the “pump” and the tubes that go with it. This could be a big plus in her daily care and when we choose to venture out to see friends and family or go camping. No more need to bring the pump, the hanging tree for the pump, and no worries about power of re-charging the batteries on the pump. Just crack open a can of “supper”, pour it through the G-tube and away we go, kind of cool, huh.

Tomorrow I will be taking the school kids on a trip to Redding’s Turtle Bay, I am soooo tempted to take the fly fishing gear and walk about 100 yards to the Sacramento River and see if I can catch a big ol trout. Last time I was there, just before Dar’s accident I caught a couple of nice ones. We’ll have to wait and see how things go.

A rain front is headed our way and we certainly need the water.

Our prayers and joy go out to the Murphy’s as they prepare to bring John home in just 5 more days. Go John!!!!!!!

Tammy, Mark, Ryne, Nikki, Cayle, we think of all of you everyday and continue to pray for Ryne. We miss you all terribly.

Bonnie, glad to hear Ken continues to make progress, please call or drop a line sometime.

Latosha, how the heck are you and your parents doing? Let us know.

Have a wonderful weekend everyone, talk again soon,

Love,

Dar/Danny/Mav