06-23-2010
0330 Hours



I knew I should have followed my "gut", just got call that Dar is being moved to ICU, for what you might ask?, C02 retention, I knew I should have followed my gut on Saturday last and pushed harder for an ABG, I knew somehthing was up then, she is safe, not in danger, we've been down this road before, but damn it I should have listened to my gut, or better yet, when are the "pros" gonna listen to my gut, prayers plz

Dar is hangin tough, still fighting that nasty UTI, probly the worst she has ever had, some nasty stuff in there. Have not even addressed the issue of low 02 sats in her blood,still on the trail of the nasty bugs. we celebrated our 5 anniversary on the 13th, hard to believe that we are comin up on two years this Xmas s...ince the Resp Arrest, she's tough and always a fighter. New trach put in today.

Love to all,

Dar/Danny/Jamiesue/Mav

"To All Fathers, Happy Fathers Day"

Sunday, 1443 Hours
I would like to say Happy Fathers Day to all the dads reading this today. To Dar's dad Alvin, a very special hello and I love you from your daughter.

Today is my first Fathers Day without my dad, if you recall my dad "passed" just 4 hours before I brought Dar home from the bay area last October. Next weekend a small group of family and friends are headed to Lake Almanor to have a special last tribute to dad at his favorite home away from home. Dad loved spending time at the lake and he and mom retired there 6 months out of the year for some 22 years. A fisheman at heart, probably where I got it, dad was his happiest at the lake.

I will not be in attendance but thats okay, some of dads ashes will be held back and although you may think it crazy I am going to keep them in one of his tackle boxes that goes with me whenever and wherever I go fishing. At the appropriate time and most likely with one of my best fishing buddies that also new dad we wil have our own little 'special time" for dad.

Dad was a trout fisherman, loved it, lived for it, next was setting his traps at the lake for crawdads. he loved making gumbo, and I have to say since I am allergic to iodine and shell fish, crawdad gumbo is damn good. I love it. Dad and mom would make me a batch just for me when they had crab feeds at the house. Good times.

There was one type of fishing that dad could not master, in fact he sucked at it, spent hours trying, spent lots of money on gear and tackle and never, never caught a BASS, I think in his own way he was envious of myself and my fishing buddy Elby for all the filets that we brought him. He did love his battered bass, just never caught on how to catch them. When dad sold his boat about a year before his passing he told me, "what do I need the damn thing for, Im gettin too old and its not safe', besides, "your gonna take me fishing and show me how to catch them bass". I so did look forward to taking him but unfortunatley our Father in heaven had other plans for my dad. I imagine by now dad has mastered the art of bass fishing and I keep him with me every time and everywhere I go fishing, so I feel it only appropriate that at some point Elby and I will release dad to the waters and fish that he so loved.

I miss you dad, I thank you for teaching me the rules and steps to being a good man and hopefully a good father and husband. I always looked up to you and respected you and have the utmost pride a son can have for his father. You are missed, you are loved, I know that you and mom watch down from above over all of us kids and protect Dar daily. I hope the fishing is great in heaven and you have the greatest time doing what you loved on earth, give mom a hug and kiss from all of your kids, Lorrie, me and Julie. Matt, Jamie and Vanessa send their love to grandpa. Mom, take good care of dad, Love, your son, Dan, preferably called Danny

We are still searching for answers to Dar's problem, chest xray is still clear, lungs sound good, very very little suctioning, barley enough there for a sputum culture but we finally got some this afternoon.
Dar does have a nasty nasty UTI, in fact it is one resistant to many meds and requires that we gown and glove up when with her in her room. The simpliest way to describe it is that she has some Ecoli bacteria in her urine, don't ask me how, I/they could not beginn to tell us how or where she got it. She has had it once before, it is treatable and is not something to get "freaky" about. It's just something that we will treat and move on.

Today her nurses and respitory folks were able to see first hand what we brought Dar in for. After taking Dar off O2 and putting her on room air they were able to see that she is not holding her oxy sats as she should. Could it be related to the UTI, you bet, could it be something else, maybe. Are we gonna find it, damn right, just might take a bit of time. I don't know how long the new med will be for the UTI but I'm sure Dar will be watched closley.

Another chest xray was order as I was leaving, the sputum culture is off to the lab, the new UTI med is going to be started shortly, now we wait, watch and pray.

Dar is in great spirits as she always is, a true testament to her faith and will to be all that God intended her to be. A super lady, a super friend and yes, a super wife. I give you this, Darlene Lee Mardilla is in the house, aware of all that goes on, ready to put in her two cents, always ready for a good laugh and one day folks, mark my words, she is gonna be ready to get up out of that bed and kick my butt for all the silly stupid things that I have said and done to keep her spirits up. Man, I can't wait for that day, in fact I will cherish it.

Well thats whats up as of this moment, I ask you to continue to pray for Dar, the angels look down from above, please send your prayers from here on earth. We thank you and again to all the dads and fathers,,,,,,,,,,,,,, Happy Fathers Day to all of you.

We love you all,
Darlene/Danny/Jamiesue/Mav/

06-17-2010
0630 Hours

Well, since our last posting, school has ended for the year and the students now begin a summer of fun in the sun.


Immediately following the last day of school I headed up to Butt Lake with our travel trailer and bass boat, even threw in the Fishcat float tube. This was the first time in over 18 months that I would leave Darlene for any great length of time, more importantly it would be the first time I was doing something for myself. Returning to places that we have so enjoyed together, I was not sure how well I would handle it. A couple of my buddies had planned on staying a few days but due to circumstances each was only able to come up for an overnight stay. Elby pulled our bass boat Saturday morning with me and, Joe came up on his new Harley Saturday afternoon.


Joe stopped off at the Peninsula Market at Lake Almanor and picked up three of the best rib eye steaks you could ever sink your teeth into. The Market has a little butcher shop that has become a favorite for Dar and I when we camp at either Butt or Lake Almanor.


Needless to say Saturday night it was a feast to behold, nothing better than an open fire and great food and a couple of great friends to enjoy it with.


Saturday evenings fishing left a lot to be desired, the wind blew like a big dog but our spirits were not halted as off we went in search of that “big toad”. We did not find the really big one but we were successful in coaxing a few to the boat.


Sunday proved to be the beginning of a tough week for Dar.


I wonder how we survived for so many years without cell phones, Internet and computers. Now that I have become an electronic gadget junkie, I wonder if I could survive a week without my blackberry and the internet. Both proved to be invaluable for the remainder of my trip.


Sunday morning I got a text message from Jamie that Dar started having bladder spasms, pretty severe I might say. We have been here before and it always seems that Jamie is the one that gets hit with this all to demanding situation.


As the spasms continued it became apparent that they were not going to cease any to soon. Jamie was a very busy caregiver for the remainder of the week. Changing pads as much as 16 times in a given day. We were able to contact our Urologist and Ditropan was prescribed, little did we know at the time that it would take about 4-5 days before we would see positive results. Jamie, the rock that she is was a knight in shining armor, always ready and faithful to her step mom. I have to say that Dar did not and has not experienced a skin break down because of the spasms.


By the time I returned on Saturday Dar was beginning to have some positive results due to the medication. Saturday was pretty much a dry day as was the night. Jamie and Scotty, also invaluable for support and errands returned home Saturday afternoon.


Sunday started out pretty well but by the afternoon the spasms returned in force and I was very busy for the remainder of the day. I made a call to Home Health looking for some answers. I attempted to flush the “cath” with no success; at this point I had but two choices. Remove the cath or leave it in and allow, “build up” in the bladder, not a good thing to have. I elected to remove the cath and prepared for a long night. Margie was gracious to come in about 9:00 pm so that I could get a little rest before heading back to work on Monday morning.


I have to say that once the cath was removed I found the source of all the problems of the week. It was definitive that once the cath was removed, you could see that during the course of the week it was plugging up. By Sunday when I removed it, it was plugged so solid you could not push water through it with a 60 ml syringe.


Monday, Home Health came out and replaced the cath and we have been dry and off the Ditropan ever since, such a relief to see Dar more comfortable.


I am attempting to have Dar return to CareMeridian for a period of about two weeks so that she can see Dr Doherty and Dr Dawson a few times. Doctor Doherty believes it is a great idea. Now we have to get it approved by Blue Cross. In as much as we start a new Benefit Insurance Year July 1st we receive 100 skilled nursing facility days. It has to be medically necessary and it may prove to be somewhat difficult but this may be the only safe way to get Dar to the Bay Area. Kurt Davis from CareMeridian is coming to the house to evaluate Dar and do what he can do to present our case to Blue Cross. Kurt has spoken to Cavi Von Husen from the Fairfax facility, and gotten some very good information regarding Dar’s situation and need to return and see Dr Doherty.


Kurt and I have spoken and we are gearing up for his visit on Wednesday.


Darlene also is now beginning her daily therapy of her Dyna Splint arm splints. It took a few phone calls to the corporate office and $1500.00 bucks out of our personal savings account but Dar will hopefully soon begin to see the positive results of the splints.


It seems way back in the day when Dar had her leg splints, (a total success I might add), at some point Blue Cross denied payment to Dyna Splints because the splint were not medically necessary and she was a and I quote” patient without rehab potential”. I remember that quote all to well but it got filed away with many other letters and such.


Well to make a long story short, Dyna Splints appealed and I too appealed the decision by Blue Cross. Both of us from different angles but both of us supporting our case that Dar’s use of the leg splints was the only reason we enjoy full range of motion and all in her legs, phooey on what Blue Cross thought, we have the proof.


In addition to the appeal Dyna Splint Corp and I came to an agreement that I would pay the balance owed and clean up the past due and when and if we won our appeal and Blue Cross paid Dyna Splint, I would be reimbursed


Felt a bit like we were being held hostage but that feeling went away very quickly as it was more important to get Dar the splints as soon as possible.


Dar wears the splints about an hour a day at the present time and it will take some time and effort on her part to get used to them. We are all looking forward to positive results in the future, oh oh almost forgot, these splints are being submitted to Blue Cross as DME, durable medical equipment, so these splints will belong to Dar and not be rental splints.


Before I add the last bit and most current news I am going to touch on a touchy subject. Touchy to you the readers evidently and definitely touchy to me the writer.


Folks there are only so many hours in the day, I am bustin my hump most all of those hours for Dar. I have no real down time; I have no transition time from work to taking care of Dar. When I got home from my trip, I had time to spot the trailer, unhook, pull ahead, grab an arm full of gear and go inside and start taking care of Dar.


That’s the way it is around here, go, go go. I apologize that sometimes its long between posts, sometimes there is not a lot going on and sometimes I am just to tired to put in the effort. An excuse, probably, but similar to those of you that don’t want to take the time to fill out a bit of information about yourself and leave a comment or thought of encouragement with a “your” name instead of “anonymous”, so impersonal.
Ok, I’m done with this. I said how I feel; you’ve said how you feel, “let’s move on”.


Yesterday, Dar was admitted to Enloe. She is in room 220, it is not clear if she has pneumonia or not but we are being very proactive to prevent it.


She does have a definite UTI again, her chest x-ray is clean and clear, her breathing is very clear and unobstructed, but she is not holding her oxygen in her blood. In other words her o2 sats are very low.
Jamie, Margie and I have all been staying in touch with Dr Verma’s office over the last few days and yesterday morning Margie returned a call to the doctor with the morning “stats” and it was decided that Dar needed to head to the ER.


Dar was in good spirits all day yesterday and was resting well when I left late last night. I will be heading over later this morning. I am not worried at this point at all and very pleased that I have a staff of help that not only love Darlene, but they all ago that extra mile for her every day. I’m not just talking about Jamie and Margie, I’m talking about all of our “team”, doctors, nurses, pharmacy, home health, everyone, all of you, thank you so much for what you and they all do. This marathon would not be what is, without all of you.


In closing, if I have offended or hurt any of you, I go on record now that that was not my intention and I apologize if I did. Just asking you to bear with this, "this is a marathon, not a sprint"

I wiiiiilllll write again, I wiiiiiiiiillllll try harder,


Love to all,
Dar/Danny/Jamiesue/Margie/Mav

Morning Doctors,

Now I'm really stumped, We just got the results of Dar's blood work up. Everything is normal, WBC is 5.8, no anemia, thyroid is good everything looks fine. I am glad we have nothing brewing, but why is Dar so lethargic.

We have discoverd in recent months that Dar does retain CO2, three times at the hospital they have over oxygenated her to where she has had to have her trach replaced and put on positive pressure in the ICU, each time her ABG showed very high levels of CO2 retention and she would do a whole lot of sleeping. Just like she is now, is it possible that she might be "naturally" retaining CO2 on her own.

We do have Dar on 2 litrers of O2 @ 24% at night when she sleeps so we can keep her O2 sats around 89-93, this is typically where she is during the day when she is awake, I discoverd at night when her sleep apnia kicks in she would constantly set of her O2 monitor. With the little extra help from her ""low flow" concentrator she does not set off her monitor and she and I both sleep.

From about 8:00 am till 10:00pm she is without assistance from the concentrator, and she does periodically set off her monitor, and will drop O2 sats to 85 occasionally when she takes a deep breath or is sound asleep and we have to remind her to breathe. We also always check her cannula for obstruction when this happens.

Could she be naturally be retaining on her own and not getting rid of her CO2, do we take her to have an ABG done and see where it is.

Her resperations seem to be normal for her, her O2 sats seem to be normal for her in the 90 to 94 range.

She is not in apparent distress or discomfort.

Can this all be related back to emotions, awareness of her circumstances? Can she be way depressed, she just does not have the spark she has always had.

Do we need to look into somthing different for "mood".

I miss my girl that was always so happy and perky, always willing to respond with happy facial expressions, she is soooo very quiet and sleeps so much at the present time. I remember you said sleep was a very good thing, is it still??????

Am I overreacting, should I just relax and ride out this period of apparent "mood change".

Danny

A short update as to the days events.

Jamie, Scott and Dar made it to all appointments without complications.

Dr Darwin gave Dar a clean bill of health as far as her lungs are concerned. They are clear and sounding good. Dr Darwin did order a complete blood work up that will be done by home health tomorrow. Dr Darwin also is wondering if Dar my be reacting to the new Amantadine and was wondering if we could stop for a few days. In my research before beginning the med I learned that you just don't stop, you have to back off slowly.

I emailed Dr Doherty and she said that it would be worth a try to back off over 5 days and then evaluate again. If we see no change then we will stop and regroup. I will begin giving Dar 2.5mls instead of 5mls tomorrow morning. Time will tell.

Dr's visit to Dr Lang was good also, he gave us a 90 day script for a UTI med that is very effective. He did say that as long as Dar has the foley we are always going to show signs of bacteria. Home test will always show positive. he told us we know her best and if we suspect a UTI than go ahead and use the new med, again time will tell.

On a brighter note, Mike Hopkins from Dynasplints will be coming to the house soon to fit Dar for her new arm splints. This is the same company that supplied the splints for Dar's legs so many months ago in the bay area. The use of these splints on Dar's legs was a total success and we now enjoy full range of motion. I can only be optimistic that we will see the same results for her arms and wrists. These splints are state of the art, even used in the world of Veternary Medicine.

I have been really pusing hard to get these splints for Dar, we did run into a major roadblock recently because Dynasplints was not going to provide them because of an outstanding balance from her leg splints. It seems that Blue Cross paid the first two months but then decided that the use was not medically neccessary, infact they said it was more investigative, what a load of crap, well Dynasplints is appealing the decision and I too have filed a grivence with Blue Cross. Unfortunatley, the balance needs to be paid. I told the very nice account clerk from Dynasplints that as soon as they got someone to the house to fit Dar for the splints I would personally write a check for the balance owed. Such a load of garbage to hold treatment for a patient while the higher ups do battle over a balance. Anyway, Dar is the important one, I will pay it and keep up my fight with insurance.

Well, that is what is going on at this moment, stay tuned and please keep those prayers coming, love you all.

Dar/Danny/Jamiesue

If someone asked me today what my definition of reality was I would reply, "what is is, and is probably going to be and there is probably not a whole lot I can do about it" but,,,that does not mean I do not have faith and hope, "I do", "lots of it", I am just living in my "real world", mostly black and white, wish I could find more gray sometimes.

No real change in Dar's condition today, this morning I was quite excited that Dar greeted me with many smiles and joyous appearance.I left for work with hope and anticipation of great reports from Jamie throughout the day.

To say the least I was "bummed out" most of the day. I am always glad and happy to get home to Dar at the end of my day at school, but I must be truthfull in saying that I am just a bit worried that I am missing something. Is something going on elsewhere in her tiny body that is causing her to feel so lousy. Am I asking the right questions, looking in the right places, adding up all the "sums" of what I might think is going on and coming up with the correct possibility. I don't know.

I have emailed Dr Doherty and Dr. Waters again hoping they might point me in a direction that will lead to a "soon" recovery for Dar. There are so many possibilities with Dar, her trach, her pump, the new placement of the porta cath, are they all interrelated some how? Are her "meds" doing what they should, is this possibly all related back to her recent UTI, is it gone, did she and is she still having some sort of a reaction to the UTI med?

These questions and so many more engulf my brain constantly during the day, and to be honest I am just a bit concerned as I said before.

Tomorrow Dar and the girls are headed to Paradise to see both doctors Darwin and Lang. I pray that they will be able to shed new light on Dar’s condition. I am anxiously waiting to hear from Dr. Doherty and what her thoughts might be.

If we receive no real answers tomorrow do I continue to weather the storm or do we make another trip to the Enloe ER and have tests done to clear any suspicion of other possibilities? Does Dar have some other “bug” that is causing all of this?

Yes, this is my reality, very black and white in the sense of what I can see and touch, but very gray with respect to what might be, what I can’t see and touch, what is out of my control. Faith, hope, you bet I have it, why, because I believe in God above and I believe in Dar, probably the most courageous person I know. To be in the “place” she is and still have the ability to laugh, cry and find sooo many reasons to be happy, yes she is my hero on earth, my best friend.

Please pray that God’s hand will be very active tomorrow as the girls head off to see the doctors. Please pray that answers will be found. Please pray that as others and I helping Dar with this “journey” will be replenished in spirit and physical strength as we continue this “marathon” back to life.

God bless you all,
Love to all.
Dar/Danny/Jamiesue