Fall is on us!!!

Mark, Vidia and I (Rosie) have been enjoying the visit from Mark's parents. Over the last 14 days they witness with me how Mark is regaining his body inch by inch.

We have a new set of goals for him, we are starting talks about more aggressive physiotherapy but he needs to follow comands better he is resisting some of the things to get him there.

I am increasing my efforts for communication stimulation, and Mark just keeps stepping up to the plate!!! YES in this area Mark seems more insterested. But again it goes up and down.

Our next main focus for more independence for him is getting the feeding tube out, out, out!!   But we still have to work for that in many ways.

First week of Septembre

September is taking us close to our fifth month after the accident. At one point I heard from one of the many medical-type people that have cross our path since the accident, that if anything is going to happen after a Traumatic Head Injury (THI), it is going to happen within the first three months.

Well, that seems to be one of the many myths around THI, not one person's recovery can be measured against another's ups and downs.

For us the end of the fourth month and the beginning of the fifth have seen Mark advance a little more each day.

One day he was trying to scratch his chin, the next he was scratching his nose, the next pushing his glasses up his nose, and most recently for the last three days he takes tissue paper or moist-wipes to clean his chin or mouth. He also moves his left leg with good coordination, even avoiding obstacles (the right one is following along at a slower speed).

He is also trying to use pen and paper, but we need to work on that longer for his left hand to take over the job (he was always right handed), on top of motor coordination.

But, so far we really have not had long periods with no gaining grown over the THI.

So if your love one has any possibility, be patient, loving and help him/her keep trying. Keep a record of any drill you perform, for example writing, or range of motion and make notes about his/her attitude, attention and the time spend on the drill. In this way you can chart down a clear progress or you can analyze what your doing to rise or lower the difficulty for him/her. But what ever your do don't give up, it takes time, but it took time the first time around when any one of us started to talk, write, eat, walk, etc.

Please visit this site!

One of the things we are waiting for is Mark saying his first word after his accident.

It make take a long time for him, it may need hours of work and we still do not know if it will happend.

Speaking is such a complicated process, for all of you who want to know more I will send you on a reading safari to:

http://www.aphasia.org/NAAfactsheet.html

This site has also been inserted in our favorite sites space.

Mind you, Mark is trying, to let us know things, but so many things are making this difficult, his tone in both hands, lack of cordination, the lung and respiratory problems he had after the accident (of which he seems to be getting ahead).

 

Here is a very fresh picture of Mark!

I took this picture of Mark on Monday 16 of this month, right after he had his tube removed. He still looks this fine (but without the gottie, it had a trimming accident and needed to be shaved off. But we hope to grow it back soon).

The Stoma (the opening in Mark's neck) has a simple dressing on it, and its very clean and dry. It will take one or two weeks for it to close up and then a month to be as good as new.

 

IT TOOK OVER A MONTH BUT DECCANULATION WAS ACHIEVED!!!!

Sorry, but these past days have been very full, starting with visits (Pia came from Victoria in BC, Canada), I am working on getting Mark's books in some kind of order to gain open space in our little apartment, to finally Mark having  ACHIEVED DECCANULATION !!!!

Now we will focus on gaining oral control for eating, swalloing and talking (Thank you again Garret for getting the information to us so we can help Mark get there!).

It happend yesterday morning, he got the canula out from his neck and he did well all day long, we even had some time to go sit under the sun. Mark is using a "Geri Chair" (to know more go to: http://lifts.articleinsider.com/24318_geriatric_chair.html)

so we can take him safely around the facility. They look more or less like this:

  So this kind of chair has a back support that can tilt-back this helps the person "gain" sitting control of spine and neck. It also can elevate his legs to avoid blood pooling in the feet.

Any way, he looked good and I hope today will be a good day to.

 

We are looking at next week for deccanulation!!!

This weekend Mark has been to his first accordion concert (By Smiling Jack in the activities room at Villa Las Palmas), he has been dressed in his usual gear more often, he has been out of bed in several occasions and the most important thing:

He has been breathing on his own. They have told me that we are looking for a deccanulation some time next week. Maybe Pia will see it happening (Pia is Mark's big sister, and she is coming to visit us).

Keep those prayers coming, and your fingers cross!!!!!!!

So what is deccanulation:

Successful decannulation marks the completion of tracheotomy management. Contemplation of decannulation assumes resolution of the underlying condition that necessitated the tracheotomy. At this stage the patient must be able to protect the airway, clear secretions, and have no significant compromise of the airway. Additionally, there should not be other mitigating factors such as anatomic abnormalities or planned surgery that would make preservation of the tracheotomy tract desirable. Removal of the tube can be done in a number of different ways and is closely supervised in hospital. Ward decannulation takes several days. A smaller tube is inserted as a routine tube change. This allows the stoma to begin the gradual process of closing. Once the smallest possible tube is used, it is blocked with a small bung for 24 hours. If the Patient has tolerated this, the tube is removed completely and the stoma covered with an airtight dressing

Oh! my 7 days without an update!!!

Sorry Folks!

But this week has been more than crazy. Vidia (Our kid) got sick down in Tijuana, Mexico.So I had to go up and down the International boarder several times.

Any way, I am happy to share that since we last posted, Mark has been "capped"or "Pluged"

decannulation plug/cap - Attaches to the outer cannula of a fenestrated tracheostomy tube when the inner cannula has been removed. Blocks airflow through the tracheostomy tube and directs breathing through the mouth and nose.

 This is how it looks, only that he has a little red cap over the oppening. (I have taken pictures for Mark's journal of his own capping, but I need to get them to the photo place)

This is how it looks when connected to the oxygen and moisture dispenser.

This means that their getting him ready to have his traqueostomy tube out. It means that he has about a week breathing on his own, with good oxygen status.

It means moving on to a new face of recovery and maybe even now working on getting the G-tube (gastric tube) out and moving onto food!!!!

His hand tone has gotten better too. His right leg is moving and feeling stimulation like fingers rubbing the foot area and bending the knee or pulling away.

Tomorrow will be Friday!!!

Mark is doing well this week in general. As Lisa our medications nurse said "He seems to be doing more little things this week"

Today in fact for the first time when I walked into the room and got to the right side of his bed (he tends to be on his left side so I do this to stimulate the opposite) I said "I Mark" and he turned his head and eyes to see me!!! Yuppie!

We are working on controlling and time body functions to make his stay at the Villa Las Palmas more pleasant.

We are still working in controlling the tone on his hands and arms, his right side is doing great, but the left has a very strong tone that causes him pain (tone is a contraction of his muscles that is involuntary in nature). The OT lady (occupational therapy) is using splints on Mark's hands (he hates this, but it really is working for him)

Here is a pic of  a splint similar to the ones Mark is using:

 

And this is the same model that Mark wears to prevent foot-drop:

Mark's attention is growing...he listens more and the flash cards are back in our routine since he is looking at them and following them.

This Saturday I will be off during the morning from 10:00 am to around 2:00 PM to support group meetings. Last weekend made such a difference in my emotional state during this week that I want more of that!!!

I am getting Mark a tank top to go with his shorts, the shirts are to hot right now.

Great Saturday!!!

Saturday came with great sun and great people!.

Vidia and I (Rosie, Mark's wife) set off for El Cajon City to visit Mark and work with his head support. When we got there Mark was very active with his right hand and needed some cleaning and grooming. Well, Mark had other plans, in the middle of trying to clean his face with a cloth he started to lift his head and shoulders of the mattress. He was lifting also his left foot when doing this in order to gain more lift!!, The nurse came in and she tried to explain that he was getting more agitated (stage 4 in the Los Amigos Chart) but we just smiled and shared our joy for this movement with her.

Julia our nurse said "He seems to want to get out of bed...Don't worry Mark soon, soon"

She is very nice.

That same day at 12:30 we took part in our first support group meeting. Here is the information for that:

Brain Injury Support Group For Survivors And Families by The Head Injury & Trauma Support System (HITS) is held every Saturday from 1:00-2:30 PM (more or less, by 1:30 it is usually going strong) in the 3rd floor conference room at UCSD Medical Center in Hillcrest.  Call 800-986-4487.

 

Well, let me tell you that hearing the recovery and surviving stories from the survivors mouth themselves was just the thing we needed. It was for me and Vidia, the confirmation that the light we have always seen at the end of this tunnel is really there. Mark's 11 week injury was called "very fresh" or "new" by the people in the group. After talking to a man who's accident happened some 20 years ago I could see way.

All of the survivors in this particular group were men that day. All had different ages and different kinds of accidents that took them down the similar path.

After the meeting we head to Mark's side again, we did our routine again with more "gusto" than before, sharing with Mark all the inside that we have gain.

Sunday was much more relax, activity with Mark comes in picks and valleys as told in the booklet that Pia (Mark's sister) mailed to me.

Well, today, Mark is going to take a shower, and we are adding some speech development drills (very early stage stuff). I hope that with this drill he can gain more control of his mouth since I see him spending time on moving lips with what looks like more purpose.

 

Bye for now

Thanks to Dr. Gina

Many thanks to Dr. Gina, a friend of Mark's from the very helpful Degreeinfo.com forum. She posted there for me to read the three new TBI web sites that we just included in the "my favorite sites" section.

We are now in room 117

Well, aside from are daily routine. Mark got a professional hair cut (a buzz haircut), his shower and a new room.

We are now in room 117, our roommates are the same couple that was sharing a room with us during the first week at Kindred Hospital. It was nice to already know them.

He had to change room (we are in the room in front of the old one) because this one has only two beds and the other patient is not moving around in a wheelchair, plus the new bed with the six inch extension that Mark needs sticks out and would have not been practical in the room with the two patients in wheelchairs.

My morning meetings were great, the Social Security Person Gwin was so nice it was incredible. Other paperwork got done also today, so in all the day was very productive. I even got dinner for Vidia on time today, but the poor dear was in after school care until 5:38 PM today. Any way, thank you for reading our journal!!

I am eating lunch right now at home, so that gave me time to write these entries. I had Mark's Social Security Administration meeting today. I was actually pleasant!

The lady, Gwin, who was the one guiding me in the process was very, very nice and considerate.

I am off to Villa Las Palmas, now...Will post about that later...

I will also include in the journal the SSA information for any one that may need it.

Forget the Plaid, Mark moved his right leg!!!!

I did showed Mark his new shirts, hi did seem to track them paying more attention to the red one and the light green one.

But...In the middle of his neck routine, Mark started moving his left leg up and away from the pillows it was on, then towards the edge of the bed, finally letting it almost hanging from the knee down.

I keep putting the leg were it should be (according to me, because Mark had other plans). By the 10th time I was on his right side when hi did the same move, but there rigth in front of me his right knee was flexing up and the whole leg looked like a small copy of the other leg's movement!!

: )

Plaid, plaid and plaid

We are happy and hopeful that Mark will move away the hospital robe pretty soon. If only for a bit of time during the day, he may be permitted to wear some of his favorite shirts (plaid of course). In order to make this happen we got Mark today really big and roomy plaid shirts with short sleeves. We did not get long sleeves for medical reasons (they need quick access to his arms).

We already have roomy shorts (red of course, since Mark has about six of them).

So if you come to visit Mark, he will be deck in his usual material.

Tomorrow we will show him all the shirts with the pictures of him wearing similar ones.

Mark held his head up longer today

Since our stay at Kindred Hospital and thanks to Allan our physical therapies, I have been working with Mark's neck to control the dystonia to the left side and to help him move it and now to hold it up!

In our room at Villa Las Palmas it happened again today, he seem very interested in Vidia's lipsinging performance of The Queen's aria from the magic flute.

I was holding his head and was feeling his effort to hold it in place, until he did it several times for longer periods of almost half a minute. In all he keep doing it for about 7 minutes.

Before this we had our usual session of massage to the neck and shoulders, which I believe is basic for him to gain flexibility.

What happend to Mark?

Many friends want to ask, but can't, many are afraid to know. But I will let you have the choice.

This link will take you to the news article about Mark's accident:

http://www.signonsandiego.com/news/metro/20040419-0946-bicycle.html

Bicyclist critically injured in La Jolla

SIGNONSANDIEGO NEWS SERVICES 9:46 a.m. April 19, 2004 SignOnSanDiego A Toyota truck is parked in the intersection of La Jolla Village Drive and Genesee Avenue after being in an accident with a bicyclist. LA JOLLA – A 43-year-old man suffered massive head injuries today when he was struck by a vehicle at a busy La Jolla intersection, San Diego police said. The bicyclist rode through a red light as he headed north on Genesee Avenue and was hit by a Toyota traveling west on La Jolla Village Drive at about 7:30 a.m., Sgt. Rodney Vandiver said. The man, whose name was not released, was taken to Scripps Memorial Hospital La Jolla and treated for massive head injuries, San Diego police spokesman David Cohen said. Traffic at the intersection was closed as police investigated the accident, Cohen said.