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