"Jackson Trach Short Lived"

December 29, 2009
0600 Hours

Darlene and I had a really nice Xmas. Dar slept much of the day and I worked on her book. I started blogging on Dar’s behalf last December. A year has now gone by and I found a program that enabled me to put all of Dar’s blogs into a single hardbound book.

I was able to put a front and rear cover photo and include all of her pictures and your comments. I included a dedication page to Dar and some of our new friends that find themselves in similar situations.I have sent some folks a copy of the book by email. The program allows you to preview the book and even purchase a soft or hard copy if you so desire. It is all up to you, if you did not get an email and would like to receive a preview let me know. It is my hope to be able to share this journey with Dar in the future.

In a recent post I told everyone that Dar’s old trach had been replaced with a Jackson #4 cuff less. In that post I also said that Dar was for the first time breathing through her nose and mouth for the first time since last year. This has always been a goal and hope for me that she would be able to have her trach removed, I had hoped this was the beginning of that goal being accomplished.

If you recall the reason Dar still had her trach was because her vocal cords have been in what they call “spasm”. Not always opening completely when she takes a breath through her nose and mouth.

When I got the call from the nurse before Xmas that Dar’s trach had been changed and indeed plugged I immediately freaked. I reminded them that her cords were in spasm and that she also had sleep apnea. I was assured that all steps were being taken to insure Dar’s safety. And indeed they were, Dar handled the transition very well,,,,,, until Sunday afternoon.

I had gone over earlier in the day to see Dar. Not feeling well still, I left around 10:00 and stopped by Barnes and Noble to pick out some books we could read to Dar and then I made a quick stop at Costco before returning home.

Jamiesue and I spoke and I must have got my wires crossed and I thought she was going to stop by the house and pick up the books before going to see Dar.

Jamie call shortly after my return home to tell me that Dar was experiencing some breathing difficulty. Her o2 sats had fallen during her “treats” and they were concerned. You must understand that with the Jackson trach you have but 2 choices; plugged (capped) or unplugged. Only when the trach is capped is Dar able to speak and hear herself. And, when the trach is capped (plugged) she is forced to breath with her nose and mouth. This trach is not anything like her old one. With the old one we could put her “speaking valve” on and we could hear and Dar could talk when she desired. We could also remove the valve and she would have a larger airway to breath with. The idea of the speaking valve is that Dar can breath through the valve and the air does not escape from it when she want to talk or laugh. The air not escaping is what allows the vocal cords to vibrate, thus we had sound from Dar.

Well, when Dar started to “desat” and I got the call from Jamie I knew what had happened. I knew it immediately; Dar’s vocal cords had gone back into “spasm”. I was 100 % sure I was correct. I spoke with the doctor on call that day and shared my knowledge and suspicions, he agreed I “might” indeed be correct. As Rehab is not set up to deal with these kinds of situations it was thought that a trip to the ER was in order.

So,,,,, at 2:00 I returned to Chico to spent the next 5 hours with Dar in the ER. The “techs” took x-rays, drew blood and watched Dar’s o2 sats carefully. Dr Welm, a pulmonary specialist and partner with Dr Val and Verma thought that a “bronc” was in order. This would allow him to look at the trach, her lungs and her vocal cords.

X-rays and blood tests looked good, but again Dar’s C02 stats were a little high. Dr Welm got prepared for the procedure and as I have been here before I too was ready to look on.

Dr Welm started his exam and things looked real good,,,,,, until he got to the vocal cords. As I suspected you could plainly and visibly see Dar’s vocal cords had gone back into spasm. In fact they were barely opening when she would try to breath through her nose and when she exhaled, not having any air in her lungs she could not make a sound. In fact, now that I think about it, prior to this whole ordeal you could hear Dar’s vocal cords when she would take a breath inward. That’s how closed her vocal cords are.

Dr Welm took pictures (I have copies now) and we discussed our options, well really only one acceptable option as far as I was concerned. We could leave the Jackson trach in and keep it unplugged. This would not allow us to hear Dar laugh or allow her to talk when all was good with her cords, or, we could switch back to the trach we used to have and use the speaking valve to let her talk and laugh and breathe through the valve and speak or laugh because the valve does not allow the air to escape.

As far as I was concerned it was a “no brainer”, “switch the darn thing and lets get back to rehab”, Dr Welm agreed. So, we now have a Shiley #4 cuff less, disposable inner cannula, and Dar is using her “speaking valve” to communicate with.

Dar and I returned to Enloe Rehab 7:00 that evening.

Although it was nice to have Dar breathing in the correct manner, this is something that we have to let time run its course. I hope that in time her vocal cords will return to normal and we will be able to get rid of the trach but for the moment this is the safest and best way for Dar to breath.

We now begin the search for answers as to whether or not this will affect her “treats”. If the vocal cords are in spasm the question now comes up as to whether or not the food could sit on top of the vocal cords and thus make it possible for Dar to aspirate. Kerry from Speech Therapy is looking at all the information and also the video swallow test that Dar passed recently. Again, time will tell. I will keep you all posted as things develop.

Dar spent a very restful night Sunday, her o2 sats were 100%, and when I arrived yesterday morning to see her briefly before a meeting, she was very happy and looking forward to Jamiesue reading stories out of her “Chicken Soup for Cat Lovers”.

Jamie from P/T worked with Dar for a while and Dar was even participating with “purposeful” movement in her arms. Although slight, this is good news since her pump has been turned way down. We pray that these little steps will continue.

Jamie called me later in the day yesterday and informed me that Dar’s pump had been turned up by 10 mics. She went from 140 to 150. Increases being taken very cautiously this time, I am very appreciative of that. Jamie also told me that Dar’s room has been changed and she is now in room 809 B, Enloe Rehab.

Well the New Year is approaching and I will be spending it with Dar as I did last year. Dar and I would like to thank all of you again for your prayers and support this last year. Our journey continues and Volume 2 of Dar’s Recovery, “A Journey Back To Life” began on December 26, 2009, we so appreciate you following Dar’s recovery and hope you will continue. We appreciate your comments and words of encouragement. Again to Angels Among Us, thank you for all of your special gifts, they continue to arrive and watch over Dar.

To our friends and family in similar “trials and triumphs” we love you and miss you and hope that the New Year will bring us all closer together and rewards for our loved one. Stewart’s, Murphy’s, Spitzer’s, Riemer’s, may God watch over all of you and bring you a year of Hope, Victory, and Love.

For those of you traveling this New Years, please drive safely.

We love you all,

Dar/Danny/Jamiesue