June 30, 2010

0600 Hours

Good morning to all of our faithful readers.

It has been a very emotional and trying time since the 18^th of the month. We took Dar to Enloe Med Center for what started out as breathing issues and low O2 saturations in her blood. It was discovered that she had a very nasty UTI again which began a strong regiment of medications.

The following Wednesday at 0245 in the morning I received a call that Dar was being moved to the ICU. Reason for this were not alarming because it seems that each time we go to the hospital Dar ends up retaining CO2 in her blood and has to go to the ICU and be place on the ventilator for a day or two. You would think that staff and her medical team would have learned by now that they have to be careful and watch Dar’s blood gasses. Or better yet listen a bit better when I make a suggestion regarding my suspicions of CO2 retention.

Later that morning around 0700 hours I called to see how she was doing and learned that Dar had suffered 2 Granmall seizures. I immediately left work and before I got there she had a third and was running a 103 temperature.

We later learned that not only did Dar suffer the seizures she also suffered what is called a “sub-arachnoid bleed with no vascular abnormalities in the left front lobe of the brain”.

We have been running the full gamete of tests and looking for answers ever since, I will say that Dar is doing better and I am enclosing some email information that I have been sending to her doctors in the bay area.

It has been a very difficult time for all of Dar’s family and again I am totally exhausted but things are looking up and we expect that there will be no permanent damage but it might take a bit of time to get Dar back to her previous level. Your continued prayers will go a long way toward that recovery.

I will try to put the emails in order so as to give you the best order of what has been going on. Here goes,

Good evening all,

As of this evening Dar's fever is back to normal, in fact it has been all day.

After discussion with Dr Park it was decided to NOT turn the pump up but rather treat Dar's spastic leg movements with Dantrium twice daily. I just called and her fever is still normal and the Dantrium is beginning to take affect. She is resting more comfortably. The choice to go Dantrium was made over turning the pump up so we might be able to better assist her breathing and hopefully get Dar off the vent quicker. It is my understanding that Dantrium does not have as much impact upon the repertory system as the Baclofen might.

Dar has been cleared for a head MRI tomorrow with a special team of medical personnel as she is still on the vent

Saturday morning there was a staffing change for the next week. Dr O’Brien, neurologist is now overseeing Dar's neuro needs and he has shed new light, concerns and thoughts as to what maybe going on. He is wanting the MRI because he wants answers as to why she had the "brain bleed" and is there something still going on. We have had Dr O’Brien before and he impressed me highly with his manner and concern, he remembers Dar well and wants answers to her current condition. He is not ruling out that we may have to have a lumbar puncture to rule out meningitis, or that there is still something going on in the brain causing problems. First and foremost is Dar's safety for the MRI and if there is to be a lumbar puncture

It is my plan to inform Dr Dawson of our current situation and make him aware that his input regarding the pump may be invaluable soon. Dar is showing symptoms of both "over and under dosing" of the pump.

Dr D, Dar was approved by insurance to return to CM but I don't know when that will be, I hope and pray that we will not have or find reason to remove the pump.

The Dilantin is doing its job, Keppra dose has been increased, her last EEG showed no activity, and we are now giving her Dantrium to decrease spastisity and aide her breathing so we might get her off the vent soon. Primaxin being given for her nasty UTI, and should be done soon.

As of this evening that's where we are. I hope to be able to give you a report regarding the MRI as soon as it becomes available and I speak with DR O’Brien tomorrow.

Thank you to all of you for your help with our " lil angel ".

Danny

Yesterday’s email to doctors below,

Afternoon doctors,

Dar successfully made it through the MRI yesterday, after a very long delay it was confirmed that the Baclofen pump reset itself and was working correctly.

After a couple hours fluid was extracted from the pump to send to the lab for testing to eliminate the possibility of meningitis.

This morning we got the results of the MRI; it showed nothing of significant concern that needed attention. It did show the "bleed" but appeared to be over, no change/difference from that of the CT and CT angiogram.

The in house labs of the spinal fluid were/ are negative for meningitis. We are still waiting for results of labs sent out of house.

Dar is still running a slight fever but has been on spontaneous breathing with the "vent" as back up since 10:00 am this morning. She will return to positive pressure at 6:00 pm this evening for evening and overnight rest. Tomorrow they will repeat today’s procedure.

I spoke with Dr Dawson at length and he feels that if we still have "neuro" concerns that we should consider UC Davis where they can address both the pump and Dar's "neurological" needs.

When the time is right for Dar to transfer to a SNF, be it from Davis or Chico, CareMeridian in his opinion is the "smart" choice. This way she will benefit from having both himself and you doctor Doherty collectively working on Dar's behalf.

Today is Dar's birthday and being the "selfless" person she is, I'm the one that got the birthday present. Today for the first time since the seizures Dar is not only breathing on her own but is also starting to follow some simple requests. She opened her mouth when asked to take her temp, will go to the "neutral" position to begin a question if her mouth is open, knows her name and will keep her mouth closed (no) till the correct name is said, to follow with opening her mouth and attempt to say yes. She will blink and close her eyes when asked and tries to "scrunch" tightly when asked.

As I said, her birthday and I get the present, so like her to not be selfish.

Dr Dawson does not recommend playing with the pump at this time till Dar is stronger.

That's what I have to date if you have suggestions or concerns please let me know.

As always we are forever grateful to all of you.

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