"250mics/24 Hours"

CareMeridian's

Nurse Lissa

CM Director, Anne-Marie (Angel), Attardi

Love you all,

Danny

Titration on Dar's pump continues, she is now up to 250mics/24 hrs, starting to see small positive results, attitude and personality are fantastic, visitors encouraged, Rm 808b, hand splints ordered, lots of attention, finding her way into all the hearts that meet her, being weaned off one med that could be affecting her alertness, I cannot express how thankfull I am to Dr Giab for making this happen.

Lots of attention being given to swallowing, it is hoped that we can move towards Barium Swallowing Test to see if there has been improvement in her ability to protect the airway and maybe be able to give Dar special treats on ocasion.

O/T is moving toward splinting Dar's right hand to aid in relaxing her finger tendons, they are severley wanting to close and we to address this.

Speech has noticed that in addition to Dar's extremity tone she is even expierencing tone in her facial muscles and the neck. This will be addressed strait away. We hope that with the pump titration and lessoning of her body tone her neck and jaw muscles will follow, thus, vocalizing should improve.

Stay tuned, exciting times ahead, I/we are soooooo glad to be back home. We love you all.

"CM Therapists, Dancin Dennis,PT, Adopted Sister Christy, OT, Dyna Vox Amy, S/T

Dar being pampered, even gets a night companion while she sleeps for a night or two till they get to know her. Pump turned up from 210 to 230. So thankful we are here.

Dar' schedule begins early this morning. There is a plan to have another future Barium Swallow test.Lots of things being discussed.

My plan today is to take care of some Costco shopping and then back to Enloe to be part of todays events. I think Dar is going to be a very busy young lady. She did very well yesterday, and was very tired by the end of the day. Her spirits were high all day and she helped each therapists as much as she was able during their evaluations.

Again, I am so thankful for this opportunity to have access to Enloe Rehab and the staff, I hope someday to be able to thank Dr Giab in person and introduce him to this "little angel" that he has soooo taken an interest in. I pray that one day in the future Dar will be able to say her own "thank you" to this very special man. Talk soon everyone, I hope to be able to tell you more of or very special farewell from CareMeridian in the days ahead. Things are so wild at this time I pray you will be patient. Our farewell from our family at CM was very special and very emotional.

By the way, go Jon Murphy, Headed home in early November!!!!!!!!!!!!!!!!!!.
So proud of you Jon, So happy for Peg, Kevin, Kaitlin, Molly, we love ya all. Hugs to all of you from Dar and I

Thank you so much everyone, we made it home safely and thru our first night, Maverick the "protector" is on the job as you can see. Please do not wait more than a couple of days to begin coming to see Dar, She is already improving, !!!!!! and wants to be with her friends. We love you all, enjoy the pic.

Mommas Home !!!!!! It's a bout Dawg Gone Time, Mr. Awesome is on the job and In The House

NEWS FLASH, WE ARE ON THE MOVE AGAIN!!!!!!!!!

God has smiled on Dar yet again, A physian at Blue Cross believes in her so much he has authorized a minimum of 7 days at Enlo Rehab for pump titration and acute rehab.if it takes longer to titrate or she makes good progress she can stay longer. This is what I was hoping for yesterday but was turned down. God bless you Dr Giab from Blue Cross

"Sorry for the delay much going on"

Video #2 of Dar's first foot movement since Dec 2008

Wednesday, October 21, 2009

0430 Hours

Please forgive the lapse in posts, it has been so hectic both here at home and work. To be quite truthful, I am still trying to put the events of the last couple of weeks into perspective, emotionally I feel like I've been hit by a freight train. So many things have gone on. If I were to write about all of them, it would be pages and pages.

The short version is that Dar returned to CareMeridian last Friday. She had a “pick-line” put in before leaving Marin General. The purpose of this is allowing better access to veins and such while Dar is on intravenous IV. She is taking a ‘kick butt” antibiotic and it requires periodic blood draw and testing. Dar being such a “hard stick”, the pick line allows things to go much smoother.

Dar is showing visible signs of improvement and Dr Doherty has returned and saw Dar yesterday.

Please read the following emails and be encouraged about what we are seeing. The “titration” of the pump will take a while and is not a “perfect science”, there will be ups and downs, and small increments, of both dosage and improvement.

Again, I apologize about the lapse in posts; please forgive me for keeping you waiting. I will get back on track quickly. Enjoy the emails.

Love to all,

Dar and Danny

Night before last

Danny,

I watched the video last night, and it was wonderful to see. It did knock my socks off. I will show it to Amy tomorrow and Dennis when he gets back. She looks like she was stretching her little toes. We want to see more, but I think whatever happens will happen in it's own time. I called Chad today, but we got cut off, so I will give him a call again tomorrow. Darlene was ranged extensively in her arms today with minimal crying. I think at least now the pump is minimizing the pain. Take care and I will talk with you soon. Mohammed and I are casting her wrist tomorrow. I am sooo excited.

-Christy

Thank you so much for this email. It could not have come at a better time. I feel so helpless being so far away, when I was with her these last 12 days I at least felt like I had some control. I truly hope you will see relaxed, limber Dar soon. I also hope Dr Dawson gets to see her soon. Please keep me up to speed, now that you have a full house it is a little hard to get info about Dar when I call. All are busy. Sorry to sound like a whiny, just having a hard time since I came home Friday. Please keep me posted and don't hesitate to use phone if necessary. Thank you so much Christy we both love you.

Last night

Hi Danny,

I am sorry that I did not get a chance to return your phone call. We are crazy busy at the facility, I had a hard time not walking in circles. Darlene got much attention today from myself, Chad and Dr. Doherty. I casted her right wrist and will see how it is tomorrow. Her tone seemed slightly better today at about 3:00. I got her left hand almost perfectly straight (wrist and fingers). When it closed back up I asked her to open it up and all fingers moved to open (whoopee, yahwho). She could barely do it, but she could initiate the movement. Chad did a wonderful job of explaining answers to my questions. The Baclofen is being continuously infused into her system so there should not be any certain time she should have less or more tone in regard to her reaction to the medication. I think it depends more on her positioning and comfort level as well as if she is feeling well. These all affect the tone greatly, the main concentration right now is figuring out what dosage is appropriate for her. Dr. Doherty saw her and I watched her increase the dosage and she said it will be about 24 hours before we see anything. Pretty wild with that computer thingy. Anyway, I thought you would like to know how her day was. She smiled and responded to most questions. Of course, she lights up with any mention of you. I will try my hardest to talk to you tomorrow. Take care.

-Christy

Thank you so much, I was not aware Dr. D was back. That is cool. Do you know what dosage number Dar went to? Any thought as to what Dr D thought. Do you really believe/think Dar may have the capability to have function in the future based on what you saw with the hands. This is exciting. Please keep me posted. As always we love ya. Dar/Danny.

To Dr Doherty, no answer as yet

Evening Dr. D

Learned this evening you were back and were able to spend time with Dar today.

Was told that you increased Dar's dosage, what number is she at now?

Anxious to hear of your plan for the next days and hopefully weeks at CM. Can you share what your immediate observations and reactions were today not having seen Dar in awhile?

Glad your back

"God gives us yet again, ""Another Miracle" Thank You

Darlene began moving both feet last night for the first time since Dec 2008, I am so thankful to God an all of you for your prayers of support and yet another miracle in Dar's Recovery. I hope you enjoy this short clip of an awesome event last night.

With all our love and thanks,

Darlene/Danny

"Pump calibrated more today"

October 8,2009
2013 Hours

Just a short note to let you all know that Dar continues to do well.

We are fighting a fever that rears its ugly head throught the day. Dar just broke a 100.4 fever a little bit ago.

Dr Dawson is not to concerned at this point but has ordered up another round ov IV antibiotics.

Dr Dawson has calibrated Dar's pump again today. Yesterday she was at 115 mics/24 hours. Now she is at 155.

I had been a little concerned that I was not seeing the same results after surgery as I did after the test trial. Now I know why. When Dar was given her test dose it was very,very high. It would have been the same as 2400 mic over a 24 hour period. When she had the pump placed he set the pump at 100. You can see the difference. The test trial was for just a short time and only to prove one thing, does she unlock. There is a math equation I will share later with you. My point is that Dr Dawson is slowly buildingthe dosage. We want enough to unlock Dar but not so much that she is sedated.

It is our hope to return to Caremeridian tomorrow, p[ease keep Dar in you prayers. As I type Dar is listening to Monk on the tv and is finding something very humerous. She is laughing and having a great time, Thank you all, we love you much.

Talk to you all soon,

Love,

Dar/Danny

"Dar is doing very well, thank you all so much"

October 7, 2009
1219 Hours

Good afternoon everyone, I must have been exhausted last night. After getting to bed around 1:00 am this morning. I was awaked at 6:30 wondering, “Where the heck am I”.

When Dar returned to the 4th floor after surgery we learned that her room had been changed to better accommodate my staying with her. This was a very nice surprise, the fold out bed/chair is not the most comfortable but it works.

Dar’s tone at about 10:00 last night was almost gone, she had spoken to our friend Pat Lewis by cell phone around 9:00 and even her speech was better. Dar said “hi Pat” so clearly I think Pat started to cry.

I was able to maneuver and range Dar so easily that it was amazing. Dar’s night nurse was astounded.

During the course of the night Dar developed a fever that got to 100.5, Dr Dawson saw Dar this morning at 6:30 and started more antibiotics and was not concerned that the fever was “site” originated. He believes it is more “post surgery” related than anything else. The sad news is that we do not get to return to CareMeridian today, tomorrow we will see. I am very thankful for Dr Dawson’s caution and attention to detail.

In addition to the fever, later in the night Dar somewhat returned to “old”, “pre” placement status. Not near as tight but tighter than she was at 10:00 pm last night.

When Dar was taking the Baclofen orally she took about 80 mics/day. With the placement of the pump Dr. Dawson set Dar up to get 100 mics/24 hours to start. She is just now getting to that mark of 100. This is a very low dosage, we have lots of room to calibrate and Dr Dawson said that he would probably return later today and make her first adjustment. I was curious how they make the adjustments and was thinking that they must have a special tool they insert through the skin and make the adjustments. Boy was I wrong; it is all done outside the skin with a remote wand that talks to the tiny computer in the pump, soooo cool. I never would have thought. The only time you have to puncture the skin is when the pump is filled, aint that somthin, the miracles of medicine.

Well, as I type I am glad to share with you that Dar’s fever is now 97, and she is resting very, very well. Still somewhat groggy, she has not needed any pain medication and the Tylenol kicked the fever in the butt.

Keep the fever away for 24 hours and I think we might be headed back to CM tomorrow; I am not going to fuss about it, Dr. Dawson will make the right call.

Very quickly, I mentioned that Dr Dawson wants to keep Dar at CM for at least 2 months but would prefer 3. The reason for this is that because Dar has a feeding tube she is at a higher risk for infection to the pump than if she did not have the “peg”. If the “peg” were to get infected the first place it will travel too, is the “metal” pump. If this happens we have real problems and must take immediate steps to deal with it. If we thought and or new that the ‘pump site” were infected, it has to come out till all infections are gone. If left unattended we could have catastrophic problems.

All this said Dr Dawson is going to make sure that Darlene is up to her maximum potential and safety before she goes home. Even when at home all caregivers are going to have to be very attentive and aware of signs of infections. Don’t mean to scare anyone, but these are the realities of what we have. So, we will just deal with it and do all that we can, I am even going to have a “med bracelet” made for Dar so people will know that she has the pump and to look for her ”cheat” in the event that she has a reaction when I am not around or we need to go to the ER.

Ok, that’s the short version of what is going on at this moment, I need to get back to Dar so I am going to close for now, thank you again so much for all your prayers and thoughts yesterday.

I am so excited to begin to see more of what we saw last night in the next few days, heck, the next 24 hours. It is going to be awesome folks, hang on for the ride, “Darlene Is In The House”. Love to all,

Dar/Danny