January 31,2010
1719 Hours

Darlene was moved to a familiar room yesterday afternoon, A room with good karma, room 217. This is where she was back in December.

Dar’s folks and sister were able to visit and spend time with Dar together as a family once she was moved to her private room.

This morning I took Dar’s chair over in the van in the hopes that while Dar is at the Med Center she will be able to sit a bit and get out of bed.

Physical therapy paid a visit to Dar this morning and worked out some of her stiffness.

I am told that Dr Arragonte will be seeing Dar sometime tomorrow and will most likely turn up her pump. It is my hope that Dar will head off to Rehab once again before returning home.

Knowing all too well that Dar is going to be susceptible to all kinds of infections I am beginning to wonder if there might be something here at the house that may be affecting her ability to fen off some of the everyday things that us folks don’t even worry about. We do our very best to keep the house clean and as germ free as possible, dust and vacuum frequently, we do our very best. I am beginning to get curious about airborne molds or something of the like. I have no idea how one would find out some of these answers but if these trips to the ER continue I may have to find out if Dar may be allergic to or be having some sort of adverse reaction to something here in the house.

We did receive some disheartening news this weekend, the help that we were hoping to be able to utilize when Dar returns home is all but gone with the exception of the pre-arranged times we can bring Margie in to the mix.

I have another lead that I will start looking into tomorrow and I pray that we might get some positive answers that will help us in the future. Our lead is a lady that works for Blue Shield and was instrumental in qualifying Ryne Spitzer and his family with around the clock assistance. I will make contact tomorrow and hopefully will be able to put our Blue Cross Case Manager in touch with the appropriate folks that may be able to help.

I will also be contacting our Home Health agency to obtain a list of employees that I can hire out of pocket.

I am amazed at the number of “certified” and “licensed” day care providers, nanny’s, and babysitters for small children that advertise on Craigslist and other media outlets. For the amount of these adds there are none for folks looking to help those that find themselves in similar situations like ours. I think there is a “foundation” or something of the like in here somewhere. We certainly can’t be the first to run into this predicament.
Well, I hope you have all had a great weekend, get ready for more rain this week, we certainly need it.

Please continue to pray for Dar and as I have requested before, if you have ideas or know somebody that knows somebody please feel free to contact me.

Until next time,

All our love,

Dar/Danny/Jamiesue

January 29, 2010
0415 Hours
Darlene continues to rest and heal.
Off the ventilator, still in the CCU/ICU, Darlene is doing better every day. Dr Val told me that he was surprised that he did not get more ‘junk” out of Dar’s lungs the other day.
Dar was taken off the ventilator yesterday and has been breathing very well on her own. She is being aided with a bit of moist air through her trach. Her trach has had a sealed suction catheter unit added so that the staff woes not have to set up each and every time Dar might need to be suctioned.
If memory serves I told you all about this yesterday, (loosing it folks), sorry about that. Anyway, Dar is doing gooood. I don’t know if the hospital has rooms in the DCU so I’m not sure if Dar will be moving very soon. Jamie and I have also heard that there is talk of Rehab again after her stay in the DCU. I guess we will find out later.
Dar’s mom, dad and sister Christine are coming up from down south this evening. Dar will be glad to spend time with them I’m sure.
I will be calling to check on Dar shortly and if there is anything new to report I will let you know. Love from all of us,
Dar/Danny/Jamiesue

Dar's nurse Rachael (called) said that Dar (last night) is in a really, really good mood. Won't stop laughing, I think they switched the oxygen bottle. Say she is reallly feeling better and entertaining everyone. Way to go baby, !!!! :)

Rachael also told me that Dar will probably begin weaning from the ventilator sometime today. In as much as the hospital has seen a deluge of pheunomonia cases and the hospital is "full", Dar will most likely remain in the CCU/ICU unit.

Rachael says that they are going to use a different type of suctioning for Dar beginning to day. We have not used this on Dar in the past but I am familiar with the concept. All it is, is a "sealed" suctioning unit. It allows the staff the ability to suction Dar without having to "set up" each and every time. This particular type set up is a sealed, sterile set-up. and will make suctioning for Dar much less awkward and less invasive.

Well, thats about all I can tell you at this early hour. I will be calling about 6:30 or so this morning and check in with Christine. I will venture to say that Dar will have rested well and will be doing well. Stay tuned as the day progresses and I will keep you posted.

Thank you for your prayers and support, we still have not heard about our "assistance/home help" as yet. I have heard that Margie is not going to be as available as we had hoped, she will be able to assist should I want to plan a fishing trip or such. This in itself will be a huge help. We still need to find help during the day and nights, please keep these needs in your prayers and if you have ideas, please let me know.

Love to all,
Dar/Danny/Jamiesue

Good morning/evening to everyone. Just something quick to ease your minds.

Dar had a restfull night and this morning according to her night nurse Dar is continuing to rest comfortabley.

Dar's white blood cell count is falling, her oxygen is now a 50% supplied by the ventilator and will most likely be dropped further today. We still await the results of her "sputom" sample. Again she has another UTI that is being treated, I believe that Dar's feeding tube may be replaced sometime today.

When relaxing and sleeping Dar allows the ventilator to do the work for her but when the nurses and staff are working with her she breathes more than what the machine is set at. Currently it is at 10, when Dar is helping it goes to 16-18 per minute. Her oxygen sats are at 100 per cent. Dar is communicating in "her" way to all that is asked of her and continues to impress the staff.

I feel confident that we will again get through this but still have to realize that Dar is going to be suseptable to these types of issues for a long time. Hopefully we can build up her immune system in the near future and as she gets stronger.

Have a great day and I will keep you informed as the day goes along.

Love to all,

Dar/Danny/Jamiesue

January 26, 2010

Posted 10 hours ago

Dar has been moved from the ICU to the step down DCU.

As of yesrerday afternoon and early evening Dar is returning to her usual self. By the time I left for home last night she was beginning to show signs of feeling better.

Weaned off the Dopamine, Dar is doing well.We hope to have our consult regarding her feeding tube today. It will be nice to have a fresh, clean avenue for nourishment.

Jamie will be with Dar shortly and I will talk to her and get our morning update.

Will keep everyone posted as time permits and or events change.

Love to all,

Dar/Danny/Jamiesue

Post update

As of this afternoon at approximately 3:00pm Dar was transferred back to ICU and placed on the ventlator. More for her relaxation and safety this will give her the ability to reast and allow the antibiotics to work. She is already showing signs of rest and healing.

Dr. Val believes that this round of pheunomina is not cause by asperation and is indeed a bacterial type. we are awaiting the results of her 'sputom" test.

Dr Val is also encouraged that Dars stats are looking better already.

Will keep you updated tomorrow as the day progress.

Love,

Dar/Danny/Jamiesue

"Pheunmonia again"

Well, Saturday turned out to be a fairly good day up untill about 10:00 pm.

Dar started a "sloppy" cough and by about 1:00 in the morning I was having to suction her quite a bit. At about 2:00am when I pulled her inner canula and found another green plug I made the call for transport.

We were off to Enloe Med Center yet again. We were in the ER till 1:00 in the afternoon yesterday and then transfered to the ICU. Dar developed a very low blood pressure that had to be controlled with Dopamine, something that elevates the blood pressure.

By 5:00pm when I saw Dr Verma Dar was stable and most likely will be transfered to the DCU, stepdown, sometime today.

It amazes me how fast this illness (pheunomina) can come on. Dar had a "PIK LINE" put in that will help with all medication deliveries and blood draws. She has had 2 of them before. This last one proved to be a very hard placement. Twice the "tech" tried on Dar's right arem and twice she failed. Finally she was able to get it place in Dar's left arm. This too proved to be a major task. Dar's little veins make it very difficult.

We are going to also have Dar's feeding tube replaced while she is "visiting" ol friends she has made in the DCU

It was a very long day yesterday and I was totally exhausted by the time I got home. Feed the dog and go to bed was all that I could muster.

I will be checking in with the ICU this morning and will find out how Dar's night was. Jamiesue will be headed over this morning to spend the day with mom.

Please know that we appreciate your continued prayers of support and encouragement.

Love to all,
Dar/Danny/Jamiesue

"Time is but a precious thing"

January 23, 2010
12:22 Hours

I have to say that trying to find the time to do all that is needed has turned out to be a monumental task.

Since our last post Darlene has been doing pretty darn good. Although today she has a little bit of a fever. I am watching it closely.

We have taken Dar to Chico for calibration of her pump; she is now at a comfortable 273 mics per 24 hours. While we were there we also had our first outpatient speech therapy class. Since Dar found her ability to vocalize she actively works at saying all words. She is not always successful in her efforts, but when she does not get the word out she reverts to her famous laugh of agreement. On the day we saw Jennifer in therapy Dar was not able to get her word answers out so well, but her ability to answer all questions was fantastic. This particular session was to see if Dar would qualify for an alternative communication device called a “Dynavox”, it was clear by the end of the session that Dar would definitely benefit from this computer.We now move to the next step to find the right one.This may take time but we have begun our search. My Blue Cross case worker Camelia is on the hunt, go Camelia.

While we were with Jennifer I received a call from the office of Dr Amy Darwin. Dr Darwin will be our new primary doctor for Dar’s everyday needs. Unfortunately, Dr Darwin was headed home for the remainder of the day with a case of the flu. As this was to be our first visit with our new doctor and having to reschedule till the 28th of the month, we have found ourselves in a bit of a sticky wicket with regard to prescription refills. We contacted Enloe Rehab and Dr Arragonte graciously stepped in and helped us out.

In my opening sentence I refer to our monumental task. Jamiesue and I still find ourselves caring for Dar alone. Both of us are still fighting this nasty cold. We still have not heard anything definite from IHSS other than we will most likely receive hours for assistance, we don’t know how many. I guess this process can take up to a few weeks to finalize. At this moment we are about 45 days into our application, and are awaiting final approval.

So, as you can imagine, I find it sometimes difficult to find the time to sit down and put thoughts to pen. Up at 3:00 am, off to work by 6:00, work all day till 4:00, back home to care for Dar till 10:00pm when she is read to go to bed. As you can see it makes for a very long workweek, now throw in the weekend and Jamiesue is off that puts Dar in my care 24/7 till Monday morning.

You can bet that as much as I want to keep all informed, many times I find myself napping with Dar. I have gotten pretty good about “catnaps” in the recliner.

I may have to resolve to “hiring” some help either through our “home health agency” or other media means to find someone to assist during evening and overnight hours. Dar’s last feeding and meds are at 10:00 and then she is ready for sleep. She does not require a lot of attention but with her apnea I find myself getting up several times a night checking on her because she is setting her “sat monitor’ alarm off.

I hope if I have to resort to hiring “out of pocket”, that it would only be for a short time while our IHSS application and approval is completed.

If any of our followers have a suggestion or offer of thought or aide, I would truly be grateful. I knew bringing Dar home was going to be a big undertaking and I do not regret my choice but I do have to admit there are variables every day that can have a major impact on any given day or hour.

I guess if I were to be perfectly honest and forthcoming with a request it is this. (You have no idea how hard it is for me to ask for help). I/we, Dar, Jamiesue need someone that could be on call and fill in for Jamie if she were to get ill, this allows me to still go to work and take care of business, we need a person that could come in and just be here during the night a few days a week so that I can get some uninterrupted sleep. Weekends with Dar are a treat for me, I do enjoy them, but a weekend or a Saturday a month would go miles for my attitude and mental stability. A fishing trip with my buddies once in awhile would go a very long was to rejuvenating my spirit. Recently you may recall that I mentioned Margie, Margie is still hopefully going to be able to help out but she has had to take care of her own family with similar issues and is not available as of yet.

I was browsing Craigslist the other day and found it very interesting that for all the adds for day care and infant care, there were posting after postings for these services but did not find any adds for “companion sitters”, “ home healthcare assistance”, or the like. I know that when we are finished with our IHSS application it will be up to us to “hire” the person or persons from a list provided or find our own at which time if the “provider” is not signed up with IHSS there are a few small requirements that have to be met before wages are paid by the county.

None the less, and all this being said, if we are to get help in the near future I will most likely have to pay “out of pocket” as I am with Jamiesue. Please if anyone has an idea or suggestion please contact me through our blogsite or email me at: cntrydjpro@sbcglobal.net or call me at 530-693-0018. Any help you might provide will be and is greatly appreciated.

Ok, back to some of the good stuff Dar is doing. Every night we read out of a book series called Hank the Cowdog, just a silly primary grad series of books that have brought much enjoyment to Dar. A friend suggested this series of 50 books that Dar might enjoy. They were right; she loves to hear the adventures of Hank. In fact she has found a way on a nightly basis to let me know she is ready for a couple of chapters of Hank. Now you may think this a bit silly to be reading primary grade level books to a grown women but let me tell you, the rewards are priceless. To watch Dar follow the story line and even know what is going to happen before it does is something to see. She laughs before you get to the punch line in most case. The lightheartedness of this dog Hank and the way he tells his stories is just what Dar needs. It engages her mind, gives her the ability to react and comprehend, they are not heavy duty, just all out fun for her. I purchased books 1 and three from Barnes and Noble awhile back and borrowed book 33 from school. We have finished the first 2 and are on the last one. I had better find more in a hurry. There are 50 of them.

Well it is time for me to give Dar her 2:00pm feeding and take her temp. I truly will try to post more frequently but as you can see time is but a precious commodity in this house. Please forgive me, I want to keep you all updated and I know you look forward to hearing of Dar’s progress; I will try harder, maybe even if it is just something very short. DEAL, thank you.

Oh, one more thing, Jamie is taking Dar to Rehab on Monday to have her pump calibrated again, we will take her to 300 mics per 24 hours, nice and slow. This will be Jamie’s first solo trip with Dar and the van, she has said that she will have a co-pilot with her, and I think she will do fine. Normally we go together, but as doctor visits are popping up a bit more frequently it is good that Jamie get used to these adventures without me. I know she will do fine. Jamie has really been a great stepdaughter to Dar, and I am so very proud of her.

Please enjoy your weekend and pray that Dar’s fever goes down. Love to all and thank you.

Have a great day, with all our love,

Dar/Danny/Jamiesue

"Daily Improvement"

January 10, 2010

1439 Hours

It really would not be right to just skip to all the good stuff since we came home Friday. So I will bring you up to speed since New Years Day.

We are already 10 days into the New Year, my birthday has come and gone and Dar is improving daily.

We brought in the New Year quietly and without much excitement. Dar has been improving daily and if you recall I have said that there is something different about Dar. I don’t think I can put my finger on ut and I don’t think I really want or need to have a full understanding of it. What I do know is that God is doing a work in Dar. Since returning to Rehab this last time, everyone has noticed a change in Dar.

Dar has had a willingness and desire to do well in all therapies. She has been trying to say all words in answering questions. She is mouthing all the right answers but just cant get the vocals to work. Kerry from speech therapy has been encouraging Dar not to force the words so hard, the harder she does the ore the cords lock up. All of us have been just trying to get Dar to relax and take a smaller breath and not push so hard.

Dar has been spending a good 2/3 hours per day in her chair. Working in the gym with the standing frame, Dar is obviously trying in ways she may not have been able to ealier and at the latter part of last year.

Dar’s pump is being titrated very slowly this time around. When we left on Friday the pump was set at 253, an increase of 23 mics per day. Tuesday when we return to Rehab for an evaluation in speech class we will have the pump turned up a little bit more. We are going to take our time this time around and I can honestly say that I don’t ever want to have an incident like we had in early December. I personally don’t think we will get anywhere near the 500 we were at before. Dar’s tone at the present is very good, so good that we do not have to bolster her arms at all. Her fingers are more limber, her legs show minimal tone, and her arms have a good range of motion.

Dar has adjusted well to each titration. I truly hope we achieve our goal of “tone release” without going to the high dosages.

Thursday night while with Dar I told her I had a surprise for her. Her immediate reaction was to purse her lips together and give me a look of “what now”, “what are you up to”.

I told her that she was going home on Friday. You would have thought that I had given her a shiny new Corvette. Her expression was priceless. That was one time (there have been many) that I wished my Blackberry had a camera. Dar was so very excited she started laughing at just the thought of being back with Maverick.

I should probably tell you that Dar and I have somewhat developed our own way of communicating. Laughter has become a way of not only showing joy about something, but it also means, “yes”. If she is happy and can’t say yes when she tries she will give a hearty laugh. If I am in the garage and have the two netbook on Skype I can ask her if she is “ok” she will try to say yes and then laugh if she cant say yes. Laughter has become a very good tool in communicating with Dar. We just reformat our questions, even those that will be in the negative with a positive response.

Well back to my story, Friday arrived and Jamiesue and I headed over to Chico in the van. Jamie picked up the van the evening before from the Joey’s shop. It had been in the shop for a fuel pump. Had to drop the wheel chair lift and the fuel tank to put a new pump in. Willy and Joey gave the van a good going over and fixed a few minor issues and we were ready to roll.

We arrived at Rehab about 1:00 and did not get out till almost 4:00. Dar was patient and happy and when we said good-bye to everyone she laughed and laughed. We had to make two stops before returning to the house to pick up prescriptions and Dar was as content as could be. In her chair, in her “Angel Van”, as we call it, and of course Maverick running the length of the van. Mav has not quite figured out what to do, he has so much room to “hunt” in. He finally “plopped” down next to Dar’s chair and went to sleep. For about 2 minutes or until the van made a different noise or slowed down, then he was up looking for action.

We arrived home just about 5:00 and got Dar situated in bed and in her nightgown. The whole time, when asked Dar was happy, happy, happy. Such an angel she is.

I should probably back up just a bit to tell you that one of the other super things that has happened for Dar is as you already know she passed her swallow tests before returning to Rehab. Although cautious, Kerry and Mark agreed that “food treats”, pudding, yogurt and lollipops would be a great incentive and go a long way in Dar’s recovery. Think about it, everyone likes to eat. Not only that, it builds swallow ability, and also using the “dum dum” suckers it challenges Dar to use her tongue and gain control of it.

When Dar left Dar was having good success with all of her “treats”. We take all precautions to insure Dar’s safety, and only let her “partake” when she is acutely awake and sitting in a 90-degree position. The other day she ate a whole small container of Tapioca pudding. The suckers are a big deal too; she does love a good lollipop.

Ok, now the rest of the story, we got Dar all settled and about 6 Jamie took off for home. I gave Dar her dinner and we both enjoyed some quiet time together. We talked about all of her angels above her; we talked about how proud of her and happy I am that she is home again. Lots of attempts to speak, lots of laughter and lots of encouragement to just relax and not try so hard to push those answers.

At 9:30 I asked Dar if she was glad to be home. Waiting for her answer or laugh, as I have grown accustomed to, I noticed she was trying much harder to say “yes”. I watched with interest and after a couple of tries I heard a very distinct and very quiet, “yes”. Dar had said yes, she had found her voice again. I could not hold back the laughter and the tears. Dar had reached yet another milestone. She had found her voicing again!!!!!!. I immediately called Jamie and told her, Jamie was on speaker and she asked Dar if she really said “yes”. Again Dar answered, this time with much more clarity and voice strength. Folks, I have to tell you that since 9:30 Friday night Dar has said, yes, no, ok, I love you, hi. She is even saying “amen” after prayers. You have to understand that previously when Dar would say amen it was with laughter. I would say prayer and end with “in Jesus name” and ask Dar, “what do you say”, then she would laugh, now she says “amen” on her own.

Each day that has gone by since Friday, Dar’s speaking has improved. In fact I have accuse her of lying in bed thinking of what she wants to say, she laughed. I have even had to turn the football game down a bit because Dar is trying to tell me something. I am encouraging her to speak whenever she has something on her mind. She is. I am not always able to figure it out but I will take every bit of it. It has been very exciting around here this weekend. She has spoken to a couple of friends and Lorrie and jerry and we just tried to call her mom and dad and Diane and Roger. They are missing out cuz they aint home, their bad.

We are looking forward to Tuesday so we can show Kerry and Mark and our new therapist in Outpatient, Jennifer.

Well this brings you up to date as of this moment; I am so appreciative for all of your prayers and support. Now that we are home I hope posting will become a little easier. Please forgive the lapses.

We also have a social worker coming to the house tomorrow to assess Dar and her needs so that we get additional help here at home. I hope this will make a huge difference in Dar’s care. Dar may qualify for many hours of paid help because of her “special needs” We also make a trip to our new Primary Care Physician on the 14^th.

^{We hope you all have a great remainder of you weekend and your favorite team wins. Love to all.}

^{Dar/Danny/Jamiesue}

.

"DAR IS HOME"

Darlene is going home today at 1:00. yipeee. Said hi to her nurse today too!! So cool!!!Tuesday we go back to rehab for speech therapy, evaluation for Dynavox Eyemax computer communication device activated when she blinks her eyes and she then navigates through programs. Totally high tech. She has some time on one while in the Bay Area, if all goes well she will qualify for one of her own. She is so excited about going home. She is soooo vey happy.

Darlene is home and so happy to be here. Mav is standing gaurd on the bed with mom and making sure she is being good. Dar has not stopped laughing since we got home. Finally settleing down, I have replaced the bathroom sink faucet, tomorrow Enloe Home Health will be here and I have lots of inventory to store. Yikes, visitors welcome and encouraged, Dar wants and needs to see her “peeps”, me too for that matter.
Will post more tomorrow and bring all up to speed on all the other great things that Dar is doing. Thank you all for your prayers.
Love ya all,
Dar/Danny/Jamiesue

Post update

9:30 pm
Darlene just spoke the words, Hi, Yes, No, Ok, we have been working on relaxation excersizes of the vocal cords and she is finding her speaking voice!!!!!! Totally different from laughing voice, different brain paths for the two. she is trying to say all she can, amazing to watch and hear.So proud of her!!!!!