"a very busy few days for Dar"

August 3, 2009
1441 Hours

I don’t think I will ever tire of hearing Dar say, “I love you”. Without fail Dar will always mouth the words but for reasons that are becoming clearer to us, her ability to actually vocalize words is sometimes infrequent.

Saturday as Christine and her family were getting to retire to their motel for the night, Darlene very clearly said, “I love you” to all of us.

Not having said anything all day, hearing those words brought the flood gates open for me. Next I knew Dar was teary eyed too. She is working so hard to make it back to all of us.

I haven specifically not written over the last few days so that I might bring you up to speed with all the recent facts and findings.

Friday, Dar and I went back to see Dr. Currey at UCSF. I learned more this time and believe I have a better understanding of what the issues are regarding her vocal cords.

I now understand that Dar’s vocal cords are not paralyzed. They are in what is called “spasm”. This is a condition controlled strictly and solely by the brain, thus making this a neurological issue. When the cords are in spasm it means that they are not relaxed and opening and closing when requested by the brain. In Dar’s situation this can cause some problems when she tries to swallow and she runs the risk of aspiration. Because of the irregular swallowing and the spasms now is not the time to begin a full court press to begin introducing regular food. It was the opinion of Dr.Currey that small amounts of Dar’s favorite foods might be something we could try under strict and controlled situations.

Dar was a total trooper during the exam and did her best to follow all request and instructions from Dr Currey. Our ambulance ride to and from SF was a treat for Dar and she was in her typical jovial attitude.

Dr Currey agreed that the Modified Barium Swallow test on Monday would give more insight into exactly what is going on when Dar swallows regular food.

We returned to CareMeridian where Dar spent the remainder of the afternoon resting and relaxing.

Saturday Dar was again in great spirits and although she never said much all day she was happy to be able to hold Maverick’s leash and be outside with myself and other residents of the facility. Dar’s nephews played the keyboard for her as a belated birthday present and she was very happy to hear the music. The boys have really gotten big since we last saw them.

I returned home late Saturday afternoon and paid bills and cleaned up around the house somewhat and just kicked back in the recliner several times only to find myself taking “cat naps” throughout the day. I spoke with Dar later in the day after Christine and her family went back to their motel for the day. Dar was in good spirits although not vocalizing word very much while we were on the phone.

Yesterday was a real treat for Dar.

Christine and the family arrived early and with prior permission from the staff were allowed to see Dar earlier than normal. Usually visitation starts about 10:00 am but since Christine’s family needed to return to Bakersfield by 5:00 they were able to see Dar early. I arrived about 7:45 and they were already with Dar saying their goodbyes. Dar handled everything well and was mouthing all the appropriate answers to all questions.

Christine, Gary and the boys left about 8:30 and headed for home.

At 11:30 we started getting Dar ready for her “special” field trip to Marin General Hospital. This trip was for the MBST, to see exactly what happens when Dar swallows.

It was planned that Dar would ride with Julie, Activities Director for CareMeridian on the Whistle Stop non-emergency public transportation for the disabled. Whistle Stop arrived about noon and our excursion began. It was also planned that I would follow in the Silverado and all three of us plus Maverick would return to CareMeridian together. The ride home would be the actual first time I would be doing a transfer from Dar’s chair to the front seat of the pick up.

Dar had a blast on the trip to Marin General; it reminded her of again being on her quad bouncing and being jostled to and fro. Julie told me that although Dar was quiet for the most part she had a smile on her face the whole time.

I arrived behind Dar only to be greeted by “valet” parking at the hospital. I could not believe it. As it turned out valet did not have to park the truck, as there was a space directly in front of the main entrance. It was as if all was planned ahead. “ya think”.

We made our way to radiology where we met Beth and the staff that would be doing the test. I transferred Dar to a special chair that would allow the x-ray machine to view all that goes on when we swallow.

Dar’s attitude was subdued and quiet but being the trooper she is she did not complain or object when I moved her to the special chair. Dar answered all questions by mouthing all the appropriate words and said she was ready for the test.

In preparation for the test all of us that would be in the room and not behind the glass window had to wear lead aprons. Reminded me of putting on my uniform and vest on the sheriff’s dept.Memories,,,, wowser.

Stay tuned I will continue this story later this afternoon

Ok , I’m back.

As I was saying, Dar was a real trooper, sitting in the special chair waiting to get started with the test.

The test was actually very simple. All Dar had to do was eat some vanilla pudding with a Barium paste added to it that made the pudding look like school paste. I think it tasted about as bad too!!!. Dar did not much care for it, but she did as she was asked and we were able to watch its travel as she swallowed.

It is amazing to me how complex and precise the human body is. As a result of this tragedy I cannot believe how much I have learned about the human body.

The best and simplest way to describe the Swallow Factor is to describe it this way.

Picture if you will driving down a single dirt road in your vehicle. You approach a fork in the road, one to the left and one to the right. The road to the right leads to your stomach and the road to the left leads to your lungs. At this intersection of roads there are safeguards in place to protect each of the roadways. The brain, or the neurological center of our being controls all of these safeguards. When Dar swallows each of these safeguards has a special job to do. One closes, one moves over and one drops a solid gate over the road to the lungs.

In Dar’s case, some of these steps or protections are just a little bit late. They are working but not as quickly and efficiently as they should and not 100 per cent of the time. As a result probably 90-95 percent of what Dar is swallowing is going to the stomach there is that little bit that is sneaking by and getting into her lungs and could cause aspiration, choking, vomiting or worse. Gone undetected or not seen all of these could lead to fevers and pneumonia. It amazes me how much of our finite capabilities are solely and strictly controlled by the brain Although I was disappointed that Dar still has a ways to go in this area I am so thankful that now we know beyond a shadow of a doubt that there is still an issue of Dar being able to protect the airway I am so very thankful we did not go ahead with a full court press to get her on solid food. Thank you Amy for your attention to looking at everything before moving forward.

Now you may ask, what about the cuff less trach Dar has. Can she manage her secretions on her own, does she, the answer is yes. Dar has been with the cuff less trach for over a month and has been managing her own secretions very well. Dar requires little to no suctioning on a daily basis. She does not have copious amounts of fluids to deal with. This is a very good thing and I am comfortable with where we are.

It is obvious things are getting better but we still have a long way to go on this “Journey Back to Life” but I would always want Dar safe and not be put in harms way, especially over chocolate ice cream. We will get there it just won’t be today or tomorrow.

Well I am sure there is more that I have left out but as I remember it will give me reason to post again hopefully before the weekend.

I spoke to Dar a little bit ago and she was with Amy and Julie in the PT room. Very tired and pretty laid back Dar answered my questions by mouthing but still not a lot of vocalizing.

We have a call into Dr. Doherty to see if maybe Dar is possibly going through some depression as a result of her becoming more and more aware of her situation. A CT scan has been pretty much ruled out at this point, as Dr. Margolin believes that we are not seeing “new” symptoms that might indicate something like a small stroke or something of that nature. I hope I have been able to convey to you how acutely aware Dar is. She is on top of everything. It is our hope that Dr. D might be able to shed some light on our little predicament and maybe make some adjustments in Dar’s meds.

As I learn more I will be faithful to let everyone know.

Have a great week everyone and I look forward to seeing you all soon. I truly miss all of you and Dar and I miss you very much.

Michael, thank you for your offer to help in any way that I might need. It means more to me than you know to know that I can call 24/7, 365. Bless you. You are a true friend

Ok, I’m done, for awhile, Love ya all, please keep your prayers coming.

Oh, almost forgot, at such time as Dar gets home and we get things settled and will be having to make the occasional trip back to see Dr. D in the bay area, and Dr Mark Spitzer, ENT. We will have to travel with Dar’s mobile house. Dr. Spitzer, Ryne’s dad has told me that he would be more than happy to see Dar and can give her the care she will require and we won’t have to go to San Francisco. The Spitzer family and Mark’s practice is in Merced. I would much rather go to Merced than San Francisco, besides then we can spend time with Ryne and his very special family. The issue is that we cannot make either one of these trips in one day. We will have to spend the night and make it a two-day trip in order to meet Dar’s specific medical schedule and her ability to sit in the truck for extended periods of time. Mark has even told me that he can recommend doctors in the Sacramento area if we find the travel to be too much for Dar.

The specific need is that we be able to find a 30-34 foot toybox hauler that we can equip with all of Dar’s specific needs and equipment. As I have said, we have a 2007, 27 foot Wave pull trailer, immaculate, that would have to be sold and paid off or traded in. Yes, a tall order, but I know from experience God can handle it.

Ok, now I’m done. Love ya

Dar/Danny/Mav