A Letter To Our Readers

August 13, 2010 1600 Hours

Dear Readers,

No, and I repeat NO!!!!!! , nothing drastic, nothing traumatic, no, nothing bad has happened to Darlene. It has just now been a month since my last post, this will probably be the time span between posts while Dar is at Kentfield Hospital.

Dar and I are so very fortunate to have two of the best doctors working for and doing everything they can for her. Doctors Doherty and Waters have been working so hard and so diligently on Dar's behalf it is amazing. These two not only have Dar as one of their patients but a whole hospital with patients in vey similar situations. Their hours are long, very long and the pressure must be crazy. Through it all they manage to keep me informed as to Dar's progress.

Doc Waters knows of my frustration in calling the hospital to get an update and has instructed me to "not" call during the week. I won't in most cases get an accurate or an update that will meet my standards. Not only are thes two doctors slammed most of the time, their support staff of nurses and "techs" are as well. I'm sure they would love to give me a play by play but they don't have the time nor is it right for me to expect them to. I know that if there is something I need to know or of they have a question, their going to call me.
Doc Waters has pledged herself to contact me as much as she can during the week, every other day or so. Sometimes it just does'nt work out. As I said they are both slammed.

I tell you these things so that you might understand that I like you sometimes am on the waiting end. Both doctors answer my emails, answer my questions and have been saints when it comes to Darlene. I do not receive info or intel unless it comes from one of these doctors, as it should be. When I get the information I do and will continue to pass it to you, it may just be longer in coming in the days and weeks ahead.

Doc D called me last Thursday and told me that Dar was looking beter than she had since her arrival back on the 6th of August. She also told me that she IS NOT READY to release Dar and infact wants to keep her another 3 weeks or so.

Doc D has been attending to the Baclofen pump and by all indications her effors are being rewarded Physical therapy has and is continuing to see the affects of the pump titrations. Doc D will continue to adjust as is needed.

Dar passed all three "blue dye" swallow test and is now with a deflated cuff in her trach 24/7, she also gets to use her speaking valve during the day.

This week Doc D is going to have another EEG done with regard to the Sub Clinical Siezures Dar was having, remember these are siezures you cannot see with the visual eye, they don't look like anything other than Dar is resting. The evidence is that Dar IS NOT her perky self.

Dar has her moments of Perk but they are not as they used to be and this is why both doctors are not ready to release Dar and indeed are still looking for ways to better bring Dar along.

The siezures and the brain bleed Dar experianced back in June really "kicked her in the butt", but we have no reason to think there was any lasting ill affects. It is just going to take lots of time.
I saw Dar on Sunday last and as doc D said she looked really good, just not her perky self. small smiles when Mav was mentioned, loves to play her "eye spy" game and doing everything she can to get well. Lots of sleep, lots of rest is what she needs, she has PT, OT, and Speech everyday. Sits in her chair we took down and is doing all that she can to get well.

Thats about all I can tell you to this point. Please understand it is not of my specific planning not to write, I am on the go from way before sunrise till way after sunset. Sometimes I even need to take just a bit of time for myself. I feel very guilty when I do but I have an ultimate responsibility to Darlene to do all that I can to protect her and care for her which sometimes means I have to take care of me. There is nothing I would not do nor nothing I would not give up to have her healthy and at home as she would like to be.

Until that happens, I will continue to fight the good fight, work hard and when an opportunity comes (scarse as they may be) for me to relax and get away, for what may be just a brief moment in time, I have to take it, guilt or no guilt. Dar needs me to stay on top of my game as well and not end up with a breakdown.

Until the next post please remember that we love you all and as "needed" information comes in I will pass it along. I am including my personal email so that if you would like to drop a note to me rather than leave a comment you may do so. Here it is.................. cntrydjpro@comcast.net

Doc D and Waters, we love ya both, thank you for all that you do!!!!!!!!!!!!!!!!!!!!!!!

Until next time,Love to all,

Dar/Danny/Jamiesue/Mav

" Dar Returns To Dr Doherty "

Darlene returned to the care of Dr Doherty and Kentfield Rehab and Speciality Hospital last Friday

The Harley is back, inspection of bike before going to Reno, Street Vibrations in Sept.

Just got home frome seeing Dar. She developed two blood clots in her legs. Yesterday she was at Marin General and had a "filter" placed in order to stop any potential clot from passing to the lungs, (embolizm). She is fine and Doc D is very pleased we got it taken care of. Next week she will go back to Marin General and have a Supra Pubic catheter placed and replace the Foley, the hope is that this step will cut down measurably the incidents of UTI's.

Doc D was awesome and very forthcoming with her time and plan for Dar, she turned up the pump a bit and will work on finding the magic number.

The staff also learned how easy it is to give Dar too much oxygen over a long period, in their effort to keep Dar's O2 sats at 98 and above they over did it a bit and she was retaining CO2,an ABG was drawn as I suggested and sure enough she was at 66, not bad but, enough to snow Dar, they pulled her off and put her on room air and within an hour or so she was waking up and starting to be a lil scamp, there was no reason for me to get upset for the staff just needs to know what I know and now they do. They all thanked me for my input and appreciated knowing all they could learn from us.

I will return un Sunday with Dar's chair and PT book of excersises and look forward to seeing a more alert and scampy girl.

" Vent is gone "

Call it coincidence, call it advocate thinking, for which I am kicking myself for not thinking of it earlier but, I suggested that Dar's trach be changed to a bigger size, it was changed last night and since 0650 this AM Dar has been off the vent and doin it on her own, YEE HAW, hmm, get more air with a bigger tube, dang, why did it take me so friggin long to put 2 and 2 together, had to help, so darn proud of Dar.

Pat on the back from Dr Verma, plan laid out for remaining week, all goes well, bay bound next week, time for a ride on the Harley, maybe cruise Oro ****, not!!!

Love to all,

Dar/Danny/Jamiesue

July 27, 2010
1000 Hours

Having been awhile since my last posting, I do not want you to think that things are going poorly, in fact it is just the opposite.

Since Dar’s seizures and the spontaneous bleed there have been some definite changes in her demeanor, attitude and overall personality.

Dar has been absolutely great, happy, talkative in her way, and most of the time a “little scamp”.

It seems since the most recent CT Scan that evidence of the recent “brain bleed” are all gone, disappeared, bye bye. The blood that was showing up on the previous scans is all gone and appears to have been absorbed by the brain, in fact the one area of concern way back in January has also disappeared.

Now then, do we have a clue as to what prompted the “bleed" the 3 seizures, no, we have no clue what so ever. Maybe just one of those things that goes unexplained.

Is it possible because of the seizures that areas of the brain that might have been somewhat docile were energized because of them, that too we may never know. What I can tell you is that Dar is acting and doing things now that we have been missing for a while now. Mouthing words in an attempt to say them if she had her speaking valve on. Her smile looks like a smile again as opposed to something that might have looked like a grimace.

Her willingness to participate in her own recovery is great, and again I find myself in awe of her.

We continue to turn down the Baclofen pump slowly with the hope that as we do it will help and assist her with the one area we are still having difficulty with, Dar’s respiration and ability to get off the vent.

Still on the vent, weaning continues. A week ago today Dar was totally off the vent and it stayed beside her in case of emergency, but was turned off. Dar went some 8.25 hours all on her own without too much difficulty. She rested overnight back on the vent but did not want anything to do with weaning the next day. We were convinced that we worked her too hard the day before. Since then we wean her a couple of hours at a time and give her a little break in between. This seems to be helping her when she is in the “spontaneous” setting of the vent. Spontaneous venting simply means that she is imitating all breathes on her own but gets a little support from the machine as she does it. In the event that she goes longer than 20 seconds the machine kicks in for her and takes over till she catches up.

“Assisted” breathing is when Dar is in full support by the machine but takes more breathes per minute than what the machine is set at. In Dar’s case when she is in the “control” mode of the vent, it is set at 14 breathes per minute and anything over that it switches to “assist”” mode which will show how many breaths over the 14 she might be taking.

The last day or so Dar has been in the “spontaneous mode much of the day, again all on her own but with a push from the machine and the safety net of the 20 second rule.

It is our plan and desire to have Dar off the vent as soon as possible and head back down to CareMeridian where doctors Doherty and Dawson await her arrival.

About a week ago I received an email from the California Brain Injury Association inviting me to attend their conference in November in Napa California. The CBIA is a non-profit organization that supplies information and support to families in situations similar to ours and of our close friends like the Murphy’s and the Spitzer’s. I felt honored to be asked and really don’t know quite what to expect but if I am able to attend it could be a new wealth of information and help for Dar and others that we might be able to share with. Thank you Cavi for your thought that I might benefit from this and be able to pass on that information but also that I might be able to contribute is some fashion.

Well that is pretty much what is going on here to this date, as we approach total weaning form the vent and get ready to journey to the bay area I will keep all of you posted.

Love to all,

Dar/Danny/Jamiesue/Margie and Maverick

July 9, 2010

0615 Hours

Posted a few seconds ago

Dar's assessment to return to CareMeridian for a "tune up" went very very well. Now we move to the clinical aceptance by CM which will not be an issue, they are really looking foward to having their "angel" return and helping her, then we wait for insurance authorization. Again I have to give credit to Jamie and Margie, it is highly documented in Dar's chart of the "remarkable" care that Dar receives, thank you both

Hey Kirk,

Was so glad to meet you today and spend some time with you. I am thankfull you took the time to come and meet Darlene and hopefully see how special she is to me and her family. She is the true meaning of an angel and a fighter.

Latest update is that Dar was more awake this evening than she had been all day. The CT scan was done and at this writing I have not heard anything from Dr. Rothfeld. I take that to mean that there is nothing of significance going on at this time.

Look forward to hearing from you in the near future, welcome to "Dar's Dream Team ".

Darlene/Danny

Posted 20 hours ago

Evening doctors,

Little update on Dar. She is out of ICU and now in the DCU. She has been off the vent and on room air for 3 days. She moved to the DCU last night.

Dar is still totally in a fog, I am thinking she is out of whack with her meds. She sleeps most of the day. When I can arouse her there seems to be no ill affects from the brain bleed. She still responds and answers all that is asked of her.

Her meds are as follows, Keppra @ 500mg twice daily, Dantrium @ 50 mg twice daily, Dilantin @ I believe 200mg twice daily, her baclofen pump is only @ 200mcs per 24 hours and the bolace feature is off.

We are getting closer to getting to CM, Kurt is coming tomorrow for an assessment(formality I hope) and I have spoken to Cavi just yesterday. I understand she and you doctor D have been in contact.

I have requested a CT Scan just prior to discharge so that you have the latest and greatest info regarding the condition of the "bleed". I hope this is appropriate and helpful for you doctor D.

I don't know exactly when discharge is planned but I thought it important to get this info to you as soon as possible.

I wished our return was abit more of a happy visit, but I am thankful that she will be back with you doctor D. I am sooo looking forward to getting her pump set correctly with you and doctor Dawson and her meds where they need to be.

I will keep you informed as things come to light. Exhausted and wiped out again I find comfort and new hope as we get closer to getting her to you, I've said it before, "thank you" will never be enough.

Danny